The Effect of Visuospatial, Verbal and Somatic Tasks on ...

The Effect of Visuospatial, Verbal and Somatic Tasks on

the Post-Meal Experience of Hospitalised Patients with

Eating Disorders

Emily Griffiths

D.Clin.Psy. Thesis (Volume 1), 2014

University College London

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UCL Doctorate in Clinical Psychology

Thesis declaration form

I confirm that the work presented in this thesis is my own. Where information has

been derived from other sources, I confirm that this has been indicated in the thesis.

Signature:

Name:

Date:

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Overview

This thesis is presented in three parts; the literature review, empirical paper

and critical appraisal. The literature review considers the effectiveness and

acceptability of interventions aimed at carers of people with eating disorders.

Included studies described a variety of approaches to educate, and provide skills and

emotional support to carers, although were generally of a poor methodological

quality. Overall, the interventions led to improved carer outcomes, were considered

helpful and there was some limited evidence to suggest beneficial client outcomes.

The empirical paper explores whether engaging in various tasks can help

hospitalised patients with eating disorders to improve the experience of ‘feeling fat’

during the post-meal period. The tasks comprised of the game ‘Tetris’ (visuospatial),

a general knowledge ‘Quiz’ (verbal) and translating ‘Braille’ (somatic), which were

designed to reduce intrusive images, thoughts and bodily sensations. When compared

to a control condition - ‘Sitting Quietly’, the tasks requiring activity were superior at

improving negative affect and additional benefits were seen for all other indicators of

the post-meal experience.

The critical appraisal discusses the rationale behind the literature review and

empirical paper. Some of the methodological decisions are reviewed, such as

choosing the tasks and the use of an online programme to deliver the trials.

Dilemmas that arose whilst conducting the research are explored, such as recruitment

difficulties, with suggestions for how the research could have been approached

differently. The appraisal concludes with personal reflections developed over the

course of the research process.

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Table of Contents

Acknowledgments.....................................................................................................12

Part 1: Literature Review........................................................................................13

Abstract.......................................................................................................................14

Introduction.................................................................................................................15

Impact of Eating Disorders on Carers..................................................................15

Carers’ Needs.......................................................................................................16

Carers Influence on Eating Disorders..................................................................16

Including Carers...................................................................................................18

Interventions Aimed at Carers.............................................................................19

Current Reviews of the Literature........................................................................20

Aims.....................................................................................................................21

Method.....................................................................................................................22

Search Strategy....................................................................................................22

Inclusion Criteria.................................................................................................23

Exclusion Criteria................................................................................................23

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Studies Included in the Review............................................................................24

Results.........................................................................................................................26

Quality Assessment..............................................................................................26

Description of Studies..........................................................................................28

Interventions........................................................................................................29

Outcome Measures...............................................................................................40

Effectiveness of the Interventions........................................................................41

Carers’ wellbeing............................................................................................41

Client outcomes..............................................................................................43

Caregiving burden...........................................................................................44

Coping abilities...............................................................................................45

Illness maintaining factors..............................................................................46

Carers’ appraisal of the intervention...............................................................48

Summary..............................................................................................................49

Discussion...................................................................................................................52

References.................................................................................................................56

Part 2: Empirical Paper...........................................................................................70

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Abstract....................................................................................................................71

Introduction..............................................................................................................72

The Post-Meal Experience...................................................................................72

Current Post-Meal Interventions..........................................................................73

Feeling Fat...........................................................................................................74

Intrusive Imagery and Working Memory............................................................76

Interrupting Processing of Feeling Fat.................................................................79

Aims and Hypotheses..........................................................................................80

Method.....................................................................................................................81

Participants...........................................................................................................81

Setting..................................................................................................................81

Design..................................................................................................................82

Tasks....................................................................................................................83

Piloting.................................................................................................................85

Measures..............................................................................................................87

Procedure.............................................................................................................89

Randomisation.....................................................................................................91

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Power Analysis....................................................................................................91

Statistical Analyses..............................................................................................92

Ethics.....................................................................................................................92

Results......................................................................................................................93

Participant Flow...................................................................................................93

Clinical and Demographic Data............................................................................94

Data Removed from Analyses.............................................................................95

Sitting Quietly......................................................................................................97

Task Performance................................................................................................97

Mealtimes.............................................................................................................98

Outcomes...........................................................................................................100

PANAS Negative...............................................................................................101

PANAS Positive................................................................................................103

Intrusive Thoughts.............................................................................................103

Intrusive Images.................................................................................................104

Difficulty Coping...............................................................................................105

Helpfulness of Tasks..........................................................................................105

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Correlations........................................................................................................106

Enjoyment, Difficulty and Focus.......................................................................107

Discussion..............................................................................................................108

Limitations.........................................................................................................111

Considerations for Future Research...................................................................113

Clinical Implications..........................................................................................114

References..............................................................................................................115

Part 3: Critical Appraisal.......................................................................................125

Introduction............................................................................................................126

Rationale for Eating Disorders Research...............................................................126

Rationale for Methodological Choices within the Empirical Paper......................128

Dilemmas...............................................................................................................131

Personal Reflections...............................................................................................133

References..............................................................................................................135

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Appendices

Appendix A: Outcome Measures used within the Literature Review...................140

Appendix B: Screen Shot of the Online Tetris Task.............................................145

Appendix C: Screen Shot of the Quiz Task...........................................................147

Appendix D: Photographs of Materials used in the Braille Task..........................149

Appendix E: Screen Shot of the Post-Task Questionnaire....................................151

Appendix F: Recruitment Poster...........................................................................153

Appendix G: Patient Information Sheet.................................................................155

Appendix H: Consent Form...................................................................................162

Appendix I: Clinician Information Sheet...............................................................164

Appendix J: Letter to Clinician..............................................................................167

Appendix K: Participant Instruction Sheet............................................................169

Appendix L: Ethical Approval Letter....................................................................172

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List of Tables

Part 1: Literature Review

Table 1: Assessment of Methodological Quality.....................................................27

Table 2: Characteristics of Included Studies...........................................................31

Part 2: Empirical Paper

Table 1: Piloted Participants Ratings.......................................................................86

Table 2: Demographic and Clinical Data.................................................................96

Table 3: Performance Results for Braille and Quiz.................................................99

Table 4: Number of Trials Completed at each Meal Time......................................99

Table 5: Outcome Measures Averaged Across Sessions.......................................101

Table 6: Correlations between PANAS negative and post task questionnaire across

tasks.........................................................................................................106

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List of Figures


Figure 1: A model of carer strain and stress............................................................19

Figure 2: Flowchart of identified Studies................................................................25

Figure 3: Proposed model of carer interventions for eating disorders.....................51


Figure 1: Flowchart of participants through the study.............................................94

Figure 2: Change in PANAS negative scores across the four tasks......................102

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Acknowledgments

I am wholeheartedly grateful for the support and advice that has been given to

me throughout this research project. I would particularly like to thank Dr. Lucy

Serpell for her thoughtful advice and her understanding during times that have felt

more stressful. I also owe thanks to Dr. Nick Hawkes for allowing me the

opportunity to research his novel idea and feeding back his expert opinions. I would

like to show my gratitude to Dr. Sam Gilbert who has been incredibly generous of

his time, not only in the development and problem-solving of the online programme

but also his feedback on drafts of this work.

Valeria Balleri requires a special thank you for all her support in recruiting

participants. Her persistent efforts were greatly appreciated and reflected in the

uptake of this research. Of course, without the participants this research would not be

possible, so I would like to thank all who took part.

My family and friends have been hugely influential. My parents have instilled

in me the determination and confidence to succeed, for which I will forever be

indebted to them and their loving support has been invaluable. My friends I thank for

their humour, consideration and kindness, which helped to keep me motivated and on

track. Finally, I wouldn't be here writing this without Ben, who I owe the greatest

thanks of all. His unlimited generosity, selflessness and love have helped to support

me throughout this journey. The rest of our adventure awaits us.

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Are Interventions aimed at Carers of People with Eating

Disorders Perceived to be Helpful and are they Effective?

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Abstract

Aims: This review aims to examine whether interventions that are aimed

solely at the carers of people with eating disorders are associated with

improvements in carer wellbeing and client outcomes, and whether

they are considered beneficial by the carer.

Methods: PsycINFO, Medline, Embase and ISI Web of Science were searched

for articles published between January 2000 and September 2013.

Eligible studies were experimental in design, reporting outcomes of

interventions aimed at carers of people with eating disorders.

Results: Twenty studies were included within the review. Due to variations in

methodology it was difficult to make comparisons between studies,

however the interventions in general appeared to be useful at

improving carers’ wellbeing and there was some limited evidence to

support improvements in client outcomes. Overall the interventions

are considered by carers as useful and satisfaction ratings were

generally high.

Conclusion: The evidence suggests that interventions for carers are helpful and

effective, and are well received. Future research should tackle

problems of poor methodological quality and insufficient power to

improve the evidence base and to help raise the profile of carer

interventions for eating disorders.

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Introduction

Impact of Eating Disorders on Carers

Caring for someone with an eating disorder is known to be highly stressful

(Kyriacou, Treasure, & Schmidt, 2008a; Treasure et al., 2001; Zabala, Macdonald, &

Treasure, 2009) and the level of burden is reported to be comparable to that of

schizophrenia (Graap et al., 2008a; Treasure et al., 2001). The level of stress is made

more apparent when we consider that over 70% of anorexia nervosa carers meet the

threshold for anxiety, whilst 38% meet the threshold for depression (Kyriacou et al.,

2008a). Caring for someone with bulimia nervosa is similarly distressing (Winn,

Perkins, Murray, Murphy, & Schmidt, 2004) and carers report experiencing powerful

negative emotions such as helplessness, feeling unable to cope and feeling that they

are ‘going mad’ (Perkins, Winn, Murray, Murphy, & Schmidt, 2004). Carer stress is

likely to be maintained by the additional financial burden of eating disorders

(Whitney et al., 2005), conflicts within the family unit (Highet, Thompson, & King,

2005) and carers feeling isolated and alone (Perkins et al., 2004), leading to an

overall impairment in their quality of life (de la Rie, Van Furth, De Koning,

Noordenbos, & Donker, 2005). Unsurprisingly, female carers tend to report greater

anxiety, perhaps because they are usually the main carer, are more likely to be at

home during the day and possibly also because they respond to the eating disorder

with greater emotional intensity (Kyriacou et al., 2008a; Whitney et al., 2005). The

impact of an eating disorder on those caring for them clearly needs to be considered

when offering treatment, as it is possible that negative carer outcomes also impede

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recovery of the eating disordered individual (Schmidt & Treasure, 2006; Treasure &

Schmidt, 2013).

Carers’ Needs

The Carers’ Needs Assessment Measure (Haigh & Treasure, 2003) has found

that carers have a high level of unmet needs particularly in relation to information

about eating disorders as well as practical and emotional support, with no differences

between anorexia nervosa and bulimia nervosa (Graap et al., 2005). This can leave

carers feeling that they lack the necessary skills to support their loved one, only

increasing their stress levels further. Carers have reported a desire for practical skills

to help them manage the eating disorder, knowledge of how best to adapt the home

environment, information about eating disorders, its prognosis and treatment,

meeting other carers to reduce feelings of being alone and emotional support from

professionals (Graap et al., 2008b; Haigh & Treasure, 2003; Surgenor, Rau, Snell, &

Fear, 2000; Winn et al., 2004; Zucker, Ferriter, Best, & Brantley, 2005). From these

studies, it appears that meeting the needs of carers will not only help reduce their

levels of distress but will also assist them in improving the wellbeing of their loved

one.

Carers’ Influence on Eating Disorders

Working with carers to support the treatment of their loved one is particularly

important when considering their role in the maintenance of the eating disorder.

Family members are considered highly significant within the cognitive-interpersonal

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maintenance model of anorexia nervosa (Schmidt & Treasure, 2006; Treasure &

Schmidt, 2013). The model describes how the family observe a physical difference in

their loved one’s appearance as they lose weight, which elicits their care and

attention resulting in the family reorganising itself to try to support her. The illness

then begins to dominate family life, families reorganise themselves to focus on the

present and other aspects of family life are neglected as their attention focuses on the

eating disorder (Eisler, 2005; Whitney & Eisler, 2005). However, if the person with

anorexia nervosa is unwelcoming of this care (which is common, due to anorexia

nervosa being highly valued as shown by Serpell, Treasure, Teasdale, and Sullivan,

1999) it can leave carers feeling helpless and to blame. This may be translated into

high levels of expressed emotion, such as criticism, hostility and over-involvement

possibly in an attempt to assert dominance for control (Greenley, 1986). A

qualitative study also revealed that carers of people with anorexia nervosa often

misinterpret the illness leading to criticism and hostility (Whitney et al., 2005). These

negatively expressed emotions, within families, are linked to longer-term and poorer

outcomes (Kyriacou, Treasure, & Schmidt, 2008b; Sepulveda et al., 2010) leading to

increased carer burden and distress (Coomber & King, 2013) and the individual with

anorexia nervosa distancing themselves from the family (Schmidt & Treasure, 2006).

Families may also accommodate to their loved one’s symptoms, to prevent conflicts

and added stressors (Whitney & Eisler, 2005), which may result in enabling some of

the core symptoms creating additional vicious cycles (Treasure & Schmidt, 2013).

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Including Carers

It appears possible that including carers in the treatment of eating disorders

will help to reduce carers’ overall distress and improve outcomes for their loved

ones. The National Institute of Clinical Excellence guidelines for eating disorders

(NICE, 2004) recommends that families are involved in both the assessment and

treatment of their loved one, and that family interventions are the treatment of choice

for adolescents, although the guidelines do not describe ways to support carers

themselves. In addition, they recommend that inpatient care is reserved for

exceptional cases only, which is important to consider as outpatients will

undoubtedly have greater contact with their carer. Carers are motivated to want to

help, although they often feel they lack the necessary skills to do so (Treasure &

Schmidt, 2001), so it is unsurprising that a large body of evidence has been

developed looking at the benefits of family interventions (see Downs and Blow, 2013

for a review). Family interventions appear to be more effective for improving eating

disorder symptoms than individual interventions for children and adolescents with

anorexia nervosa (Eisler, Le Grange & Asen, 2003).

Treasure and colleagues (Treasure, Whitaker, Whitney, & Schmidt, 2005)

have developed a model of carers’ coping with anorexia nervosa. The model

considers a variety of factors that influence the ability for carers to cope (Figure 1).

They report working with families to target each of these factors, for example

through networking with other carers to help reduce stigma and breaking vicious

cycles of interpersonal factors that maintain the stress of being a carer.

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Figure 1. A model of carer strain and stress (Treasure et al., 2005).

Interventions Aimed at Carers

Despite the evidence endorsing family interventions for eating disorders there

is a clear need for interventions aimed solely at the carer for a number of reasons.

Firstly, family therapy is very expensive, time consuming, stressful and complex so

alternative interventions may need to be considered, particularly in non-specialist

settings. Secondly, family interventions are not effective for all, with a third of

clients not reaching 85% ideal body weight (Eisler, Le Grange & Asen, 2003)

suggesting augmentations to these treatments may be beneficial. Thirdly, many

people with eating disorders may be reluctant to be involved in treatment, perhaps

due to a lack of insight or the highly valued nature of eating disorders. Where eating

disordered individuals refuse treatment, carers still need support. Finally, family

interventions involve improving client wellbeing but it is clear that carers need

support to reduce their own levels of distress.

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Current Reviews of the Literature

A substantive review of quantitative literature looking at the effectiveness of

family-based interventions for eating disorders over the past 25 years has recently

been published (Downs & Blow, 2013). The studies they reviewed found that family

interventions were effective for early onset anorexia nervosa in adolescents, but

mixed results were found for both adult populations and sufferers of bulimia nervosa.

A review of randomised controlled trials (RCTs) comparing family therapy with

treatment as usual found some evidence to suggest that family therapy was more

beneficial in the short term (Fisher, Hetrick, & Rushford, 2010). However, the

authors express caution regarding these findings, due to the limited number of trials

(N=13) and small sample sizes.

A special edition of the Journal of Family Therapy (Asen & Schmidt, 2005)

reviewed a range of models of treatment that involve families of those with eating

disorders including the ‘Maudsley model’, for adolescents with eating disorders of

short duration. This intervention has recently been modified to include: multi-family

therapy (several families receiving therapy together, see Dare and Eisler, 2000),

conjoint family therapy (all family members included in the therapy at the same

time) and separated family counselling (family members and their loved ones receive

therapy separately see Eisler et al, 2000). In addition, they included a description of

interventions aimed at carers, based on a carers model of distress previously

mentioned (Treasure et al., 2005). A variety of ways of reducing carer stress were

suggested, some of which may warrant interventions without the inclusion of the

client. In fact, one intervention has been developed over the last 16 years, which

involves training carers to become experts at managing their loved ones illness. The

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collaborative care skills training workshops content and the processes involved are

discussed in detail in one review (Treasure et al., 2007) and a number of the studies

examining the effectiveness of these workshops will be considered within this

review.

One review has specifically examined technology-enhanced interventions for

eating disorders (Baurer & Moessner, 2013). They reviewed just two studies that

offered technology interventions aimed at carers. One study found a benefit of an

online cognitive behavioural therapy intervention for carers in reducing their anxiety

and depression (Grover et al., 2011a), whilst a pilot study found reported benefits of

an Internet-based chat support program as an adjunct to family-based therapy

(Binford Hopf, Grange, Moessner, & Bauer, 2013). Both of these studies are

included within this review.

Aims

Research indicates a valuable role of family and carers in eating disorders,

but no review has been conducted to assess the effectiveness of interventions aimed

solely at the carer, without the involvement of the eating disorder sufferer. Therefore,

a systematic review of the literature was conducted to determine the effectiveness of

interventions aimed at the carers of people with eating disorders on carer wellbeing

and client outcomes. The review will also consider carers appraisals of these

interventions.

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Method

Search Strategy

Using the search terms “eating disorders” AND “carer” AND “intervention”

possible relevant articles were scanned to develop search terms. A computerised

search was then conducted of PsycINFO, Medline, Embase, ISI Web of Science for

articles published between January 2000 and 22nd

September 2013.

The search terms were “eating disorder*”, “anorexia nervosa”, “anorexia”,

“bulimia nervosa”, “bulimia” and “disordered eating” AND “carer*”, “caregiver*”,

“care giver*”, “carer* burden”, “parent*”, “mother*”, “father*”, “relative*” and

“partner*” AND “intervention*”, “group intervention*”,“support group*”, “family

intervention*”, “family support”, “training”, “psychoeducation*”, “psycho-

education*”, “self-help”, “online training”, “on-line training”, “parent* support”,

“carer* support”, “coaching”, “parent-training”, “parent-to-parent” and “skill*

training”. In addition, MeSH terms were used in PsycINFO, Medline and Embase

and limited to human articles. Truncation of terms was used to identify multiple

endings and plurals in words, such as eating disorders and eating disordered.

Reference lists of all identified articles were also manually examined. All

citations were transferred to Mendeley (https://www.mendeley.com).

http://www.mendeley.com/

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Inclusion Criteria

1. Studies reporting interventions aimed at carers; defined as anyone providing

unpaid support to someone unable to cope without this help, which can

include relatives, partners or friends (https://www.carers.org).

2. Carers supporting people with eating disorders; anorexia nervosa, bulimia

nervosa and eating disorders not otherwise specified.

3. Study examines any intervention aimed at the carer, independent of the

person with an eating disorder.

4. Experimental design looking at the effectiveness of a carer’s intervention on

outcomes for the carer and/or person with an eating disorder including

satisfaction ratings of the intervention.

5. Published in English.

6. Published in a peer reviewed Journal.

7. Published between 1st January 2000 and 22

nd September 2013.

Exclusion Criteria

1. Carer interventions for alternative eating disorders such as; obesity; feeding

and eating disorders of infancy or early childhood, e.g. pica; malnutrition;

and loss of weight due to physical health problems, e.g. anorexia-cachexia.

2. Interventions aimed primarily at the person with an eating disorder and where

they are actively involved e.g. conjoint, separated and multiple family

therapy.

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3. Study does not report on numerical outcomes of the intervention e.g. protocol

papers, descriptions of interventions and solely qualitative analyses.

4. Studies that examine interventions designed to prevent eating disorders.

Studies Included in the Review

Once duplicates were removed, a total of 1,950 studies were identified using

the search terms. Using the inclusion and exclusion criteria the titles and abstracts

were scanned to identify relevant studies. A total of 1,714 articles were immediately

excluded as they were irrelevant to the study. A further 216 records were excluded

following further examination of the text for the following reasons; identified as

reviews, meta-analyses or editorials (n= 81); books, chapters, or handbooks (n= 59);

the intervention was not aimed at the carer (n= 33); the intervention was designed for

the prevention of eating disorders (n= 12); non-English (n= 11); comments and

replies (n= six); no numerical outcome data reported (n= nine); unpublished (n=

three); and abstracts (n= two).

One study (Leichner, Hall, & Calderon, 2005) was obtained after examining

the reference lists but was later excluded as it was found to be a summary of an

intervention for carers, with no quantitative data reported. One study sampled carers

of people with eating disorders and people who were at risk of relapse (Grover et al.,

2011b). The study was kept within the review as only one individual (3.7%) fell into

this latter category. Another study included professionals as part of their sample of

carers (Haltom, Ribeiro, & Potter, 2012). Paid or voluntary staff were not considered

carers within this review, however it was deemed acceptable to include the study as

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only ‘a few professionals’ made up the total sample of 81. In total 20 studies were

included in the review. See Figure 2 for flowchart.

Figure 2. Flowchart of identified studies.

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Results

Quality Assessment

Study quality was assessed using the adapted version of the Downs and Black

rating sheet (Cahill, Barkham, & Stiles, 2010). This tool assesses quality of practice-

based health interventions and points are awarded according to information provided

by the study to allow for an unbiased evaluation, external validity, internal reliability

and confounding factors. The final question was reworded to create a binary

response. A score of 1 was given if the study conducted a power analysis and

sampled a sufficient number of people to detect a clinically important effect. A score

of 0 was given if either the study did not conduct a power analysis or if it did not

sample a sufficient number of people. Table 1 reports the scores for each study under

these four domains. The average quality rating was 18.0 out of a possible 32 points

(SD: 5.0). Reporting was generally high at an average of 70%, however quality

confounding biases were low at 14%.

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Table 1

Assessment of Methodological Quality

Study

Reporting

(Out of 11)

External

Validity

(Out of 11)

Internal

Reliability

(Out of 5)

Internal

Reliability-

Confounding

Bias

(Out of 5)

Total

(Out of

32)

Abbate-Daga et al. (2013) 9 9 3 1 22

Binford Hopf et al. (2013) 11 7 4 0 22

Cairns et al. (2007) 4 6 2 0 12

Carlton & Pyle. (2007) 8 7 2 1 18

Gísladóttir &

Svavarsdóttir. (2011)

8 8 4 0 20

Goddard et al. (2011) 10 6 4 4 24

Grover et al. (2011a) 10 7 5 3 25

Grover et al. (2011b) 10 7 4 0 21

Haltom et al. (2012) 5 1 1 0 7

Holtkamp et al. (2005) 2 6 2 0 10

Hoyle, et al. (2013) 7 0 5 2 14

Pasold et al. (2010) 6 9 3 0 20

Pépin & King. (2013) 10 9 4 0 23

Rhodes et al. (2008) 8 6 5 2 21

Sepulveda et al. (2008a) 5 6 3 0 14

Sepulveda et al. (2008b) 10 7 4 0 21

Sepulveda et al. (2008c) 8 4 3 0 15

Sepulveda et al. (2010) 9 7 3 0 19

Uehara et al. (2001) 9 6 3 1 19

Zucker et al. (2006) 5 5 2 0 12

Mean 7.7 6.2 3.3 0.7 18.0

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Description of Studies

All of the studies included within the review aimed to determine either the

effectiveness or acceptability of an intervention for carers of people with eating

disorders, with the exception of one study which aimed to test whether a new

measure was sensitive to change following a carers’ intervention (Sepulveda,

Whitney, Hankins, & Treasure, 2008). The interventions described within the studies

comprised of; psychoeducation and skills training groups, which often included an

element of emotional support (N=11); individual counselling sessions (N= one);

psychoeducation and training DVD and/or manuals (N= four); online chat groups

(N= one); online psychoeducation and training modules (N= two); and a veteran

carer reflective session (N= one). All of the studies used convenience samples and

only three studies compared the intervention to a control group. The majority of

studies either aimed the intervention solely at parents or did not describe the

relationship of the carer to their loved one. A few studies included other family

members and friends who were considered carers. The means for the carers age were

reported in nine studies and ranged from 44.9- 53.3 (total mean= 50.4). The carers

were mostly female (52-93% in thirteen studies where the carers gender was reported

and couples were assumed to be heterosexual unless stated otherwise) caring for

mainly female care recipients (80-100% female in nine studies where the clients

gender was reported), who were a combination of adolescents and adults (N=11

studies). Six studies included solely adolescent care recipients (18 or under). The

clients within the studies were diagnosed with anorexia nervosa, bulimia nervosa or

eating disorders not otherwise specified, except three studies which only included

anorexia nervosa (Binford Hopf et al., 2013; Hoyle, Slater, Willimas, Schmidt, &

29

Wade, 2013; Rhodes, Bailee, Brown, & Madden, 2008). Carers completed a variety

of outcome measures to assess changes in variables such as family functioning, carer

distress, carer burden, coping abilities and expressed emotion. Twelve studies

included a measure of carers’ satisfaction regarding the intervention. Three studies

included outcome measures for care recipients assessing changes in medical and

behavioural outcomes of their eating disorder. Table 2 summarises the included

studies.

Interventions

The majority of the study authors were aware of the importance of providing

information about eating disorders to carers, many of which also involved teaching

skills, strategies and adaptive coping responses to assist them in the caring of their

loved one. Six studies within the review considered the effectiveness of ‘The

Collaborative Care Skills Training Workshops’ also known as ‘Expert Carers

Helping Others’ (Goddard et al., 2011; Pépin & King, 2013; Sepulveda, Lopez,

Macdonald, & Treasure, 2008a; Sepulveda, Lopez, Todd, Whitaker, & Treasure,

2008b; Sepulveda, Whitney, Hankins, & Treasure, 2008c; Sepulveda, et al., 2010). In

these workshops, carers are trained in strategies that help in the caring of their loved

one and are based on the Maudsley model of the maintenance of eating disorders

(Treasure et al., 2007) and a model of carer coping (Treasure et al., 2005). They

involve carers developing skills in communication, emotional intelligence and

reducing expressed emotion. The workshops are delivered via six sessions each

lasting two hours, over a three month period, followed by an additional session three

months later. Carers are also provided with a written manual. Whilst most of the

30

studies using this programme were carried out in the originating centre, one study

examined how effective the workshops were when delivered to 15 carers in Australia

by therapists who had received two days of training (Pépin & King, 2013). The

workshops were also transferred on to a set of five DVDs and offered to carers along

with three telephone coaching sessions (Sepulveda et al., 2008a). The benefit of

additional telephone sessions along with the DVDs was evaluated in a further RCT

(Goddard et al., 2011).

A number of other studies report developing psychoeducation and training

groups to support carers. One of these groups consists of five monthly sessions

lasting two hours each with a combination of lectures to provide information about

eating disorders and adaptive strategies, as well as discussions to offer support

(Uehara et al., 2001). Four separate groups were run over two years involving

between five and twelve family members. This study then influenced a team in

Iceland to develop a similar intervention (Gisladottir & Svavarsdottir, 2011). The

intervention involved four weekly sessions covering eating disorders symptoms and

treatment, supportive conversations about the impact of the illness on the family,

validating emotions and encouraging more adaptive beliefs as well as homework

tasks between sessions.

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Study Sample Intervention Measure(s) Main Findings

Abbate-Daga et

al. (2013)

N Carers (of N clients) 166 (87)

Relationship Parents

Carers’ Age Unknown

Carers’ Gender (%F) 52.4%

Client’s Age (Range) 21.7 (15-30)

Client’s Gender (%F) 100

Diagnosis AN-R (36.4%)

AN-BP (20.5%)

BN (23.9%)

EDNOS (19.2%)

Country Italy

Eight weekly parent counselling

sessions, each lasting 60 minutes.

An additional informative group

two weeks before.

Aim: to help parents cope more

effectively by promoting more

adaptive coping responses.

Carers:

-Clinician evaluation of

coping abilities

Clients:

-EDI-2

Parents with improved coping resources had

daughters with a lower frequency of bingeing and

purging than those who had not improved.

Binford Hopf et

al. (2013)



Carers’ Age 44.9

Carers’ Gender (%F) 76.9



Diagnosis AN (100%)

Country USA

Fifteen virtual online chat sessions,

90 minutes duration. All were

involved in family therapy at

various stages of treatment.

Aim: to encourage and support

parents, including discussing

helpful strategies.

Carers:

-ECI

-EDSIS

-Before and chat session

questionnairesa

-Programme evaluationa

The programme was rated highly as parents felt

more able to cope. Parents stated that they would

recommend the sessions to others.

Cairns et al.

(2007)


Relationship Parents/caregivers


Carers’ Gender (%F) Unknown

Client’s Age (Range) 13-18 (unknown)

Client’s Gender (%F) Unknown

Diagnosis AN (65%)

BN (2%),

EDNOS (33%)

Country Canada

Meal support training via a DVD

and manual.

Aim: to introduce meal support and

help caregivers understand their

loved ones feelings at meal times,

whilst offering meal support

strategies.

Carers:

-Evaluation

questionnairea

Meal support training was found to be

informative.

Table 2

Characteristics of Included Studies

32

Carlton & Pyle.

(2007)

N Carers (of N clients) Intervention: 29

Control: 53

(unknown)






Diagnosis AN (58.5%)

EDNOS (41.5%)

Country USA

Parent Education and Support

Program (PESP) involving a guide,

an open parent support group and

weekly open medical question and

answer session.

Aim: to provide information and

emotional support developed from

focus groups evaluating carers

needs.

Carers:

-Evaluation

questionnairea

Parents who were offered the PESP felt more

educated and prepared than parents who were not

offered the PESP.

Gisladóttir &

Svavarsdóttir .

(2011)

N Carers (of N clients) 21(14)

Relationship Parents, partners

& siblings >18

Carers’ Age (Mean) Unknown


Client’s Age (Range) 21 (15-31)


Diagnosis AN (19%)

BN (57%)

Unspecified (10%)

Unknown (14%)

Country Iceland

Education and support intervention

involving lectures and group

discussions.

Three groups that ran weekly for

four sessions.

Aim: to improve understanding and

provide support to assist the client’s

recovery.

Carers:

-LEE

-FQ

-ABOS

-Satisfaction

questionnairea

The intervention led to improvements in

understanding of the illness and satisfaction

ratings were high.

Goddard et al.

(2011)

N Carers (of N clients) ECHO: 80

ECHOc: 73

(153)

Relationship Carers

Carers’ Age 49.6


Client’s Age (Range) 20.85 (unknown)

Client’s Gender (%F) 95.4


BN (7.8%)

EDNOS (3.2%)

Unknown (9.3%)

Country UK

Self-help intervention: expert carers

helping others (ECHO) compared

to guided self-help (ECHOc).

ECHO: book and five DVDs.

ECHOc: an additional three

telephone coaching sessions.

Aim: self-help targeted at reducing

maintaining factors proposed within

a cognitive interpersonal

maintenance model of eating

disorders.

Carers:

-HADS

-GHQ-12

-ECI

-EDSIS

-FQ

-CSE

-AESED

-GEDF

-EatBeh

-Evaluation

questionnairea

Both conditions led to improvements in carers’

distress and all other factors.

33

Grover et al.

(2011a)

N Carers (of N clients) OAO: 33

Beat: 30

(63)

Relationship Carers

Carers’ Age 48.2





AN- BP (17.5%)

EDNOS (20.6 %)

Unknown (1.6%)

Country UK

Overcoming Anorexia Online

(OAO) web intervention compared

to Beat (usual support from a

patient and carers organization).

Eight weekly online modules with

additional weekly 20 minute

guidance from therapist via phone

or email.

Aim: cognitive behavioural

intervention to provide information,

promote self-monitoring and skills

training to manage the illness.

Carers:

-HADS

-ECI

-EDSIS

-LEE

-AESED

-Feedback

questionnairea

OAO led to improvements in carers’ distress and

expressed emotion compared to carers in the

control condition.

Grover et al.

(2011b)


Relationship Carers

Carers’ Age 50





AN- BP (18.5%)

EDNOS (7.4%)

Risk of relapse

(3.7%)

Country UK

Piloting nine educational

workbooks (based on OAO). Carers

also received 20 minutes weekly

email or telephone therapist

support.


intervention to provide information

and suggest skills in managing the

illness.

Carers:

-HADS

-ECI

-EDSIS

-LEE

-FMSS

-SPSI-R

The intervention led to an improvement in carers’

distress, expressed emotion and positive

experiences in caregiving, maintained at 10-12

week follow-up.

Haltom et al.

(2012)

N Carers (of N clients) 81 (unknown)

Relationship Carers and a few

professionals



Client’s Age (Range) Unknown


Diagnosis Eating disorders

Country USA

Parent Partner Program consisted of

lectures, slides, group discussion

and questions and answer

discussions. Two sessions lasting

three hours each.

Aim: to provide skills, knowledge

and support to help manage the

illness.

Carers:

-Evaluation

questionnairea

100% of carers found the intervention helpful and

improvements were made according to the

evaluation questionnaire.

34

Holtkamp et al.

(2005)







Diagnosis AN, BN &

EDNOS

Country Germany

Five psychoeducation sessions

lasting 90 minutes each.

Aim: to increase the parents

understanding of eating disorders.

Carers:

-Evaluation

questionnairea

The majority of carers rated the intervention as

helpful.

Hoyle et al.

(2013)

N Carers (of N clients) OAO= 18

OAOg = 17

(unknown)

Relationship Carers


Carers’ Gender (%F) 89



Diagnosis AN (100%)

Country UK & Australia

Seven weekly modules of OAO via

the web. This intervention was

compared to OAO with additional

email or telephone guidance

(OAOg).


intervention to provide information,

promote self-monitoring and skills

training to manage the illness.

Carers:

-LEE

-GHQ-28

-SF-36

-DASS

-EDSIS

-ECI

Clients:

-LEE

The intervention led to improvements in carer

intrusiveness and negative experiences of care

giving.

Pasold et al.

(2010)


Relationship Parent/guardian’s





Diagnosis Unknown

Country USA

Weekly, open, parent support

group.

Aim: education and discussion of

personal experiences with no

specific agenda.

Carers:

-PSSEDa

Carers reported greater understanding of the

illness and found the intervention supportive.

Greater attendance related to greater satisfaction

with treatment.

35

Pépin & King.

(2013)



Carers’ Age 51


Client’s Age (Range) 20.13 (unknown)


Diagnosis AN (64%)

BN (18%)

AN and BN (9%)

Unknown (9%)

Country Australia

Six weekly Collaborative Care

Skills Training Workshops lasting

2.5 hours each.

Aim: introduction to the

maintenance model of eating

disorders and the model of carer

coping. Teaching carers a variety of

strategies.

Carers:

-Brief Cope

-EDSIS

-GHQ-12

-FQ

-Evaluation

questionnairea

The intervention led to a reduction in a number of

factors believed to maintain the illness,

maintained at 8 weeks follow-up.

Rhodes et al.

(2008)







Diagnosis AN (100%)

Country Australia

RCT to compare family therapy

with an additional parent-to-parent

consultation in the presence of a

therapist between sessions three and

five, lasting one hour.

Aim: to provide hope, listen to

others experiences and reduce

feelings of isolation.

Carers:

-PVA

-DASS

The additional consultation led to a small increase

in rate of weight restoration.

Sepulveda et al.

(2008a)


Relationship Carers

Carers’ Age 52.1





BN (14.3%)

Unknown (7.1%)

Country UK

Five skills based training DVDs

(based on the Collaborative Care

Skills Workshops) and three 30

minute telephone coaching

sessions.

Aim: for carers to reflect on their

role in the maintenance of the

illness, reduce medical risk and

elicit change through learning

strategies.

Carers:

-GHQ-12

-HADS

-ECI

-FQ

-Acceptability

questionnairesa

High satisfaction ratings were reported across the

DVDs, whereas there was no reported reduction

in distress and depression.

36

Sepulveda et al.

(2008b)


Relationship Parents, partners

& siblings

Carers’ Age 52.7




Diagnosis AN (79%)

BN (21%)

Country UK

Six sessions of The Collaborative

Care Skills Workshops lasting two

hours each. In addition, carers are

provided with a written manual and

a follow up session three months

after the intervention.

Aim: to help moderate expressed

emotion and teach motivational

interviewing to improve

communication and readiness to

change.

Carers:

-GHQ-12

-ECI

-EDSIS

-Acceptability

questionnairea

The intervention led to improvements in carer

distress and negative experiences of care giving,

and was considered highly valuable.

Sepulveda et al.

(2008c)


Relationship Parents, sisters &

friends

Carers’ Age 51.4




Diagnosis Unknown

Country UK

As Sepulveda et al. (2008b)

Carers:

-EDSIS

-GHQ-12

-ECI

Client:

-CGAS

The workshops led to improvements on the

overall and guilt subscale of the EDSIS. Negative

aspects of care giving, carer distress and patient’s

functioning all improved.

Sepulveda et al.

(2010)


Relationship Carers

Carers’ Age 53.3



Client’s Gender (%F) 93.5


BN (22.2%)

Country UK

As Sepulveda et al. (2008b)

Carers:

-FMSS

-GHQ-12

-ECI

The intervention led to a reduction in the number

of carers with high expressed emotion,

maintained at 3 month follow up. Carer distress

and caregiving burden also improved.

37

Note. Only measures relevant to this review are included. ABOS= Anorectic Behaviour Observation Scale; AESED= The Accommodation and Enabling Scale for Eating

Disorders; CSE= The Revised Scale for Caregiving Self-Efficacy; ECI= The Experience of Caregiving Inventory; EDES= Eating Disorder Evaluation Scale; EDI-2= Eating

Disorder Inventory 2; EDSIS= The Eating Disorder Symptom Impact Scale; FMSS= Five-Minute Speech Sample; FQ= The Family Questionnaire; DASS= Depression

Anxiety and Stress Scale; GAF= Global Assessment of Function; GEDF= Global Eating Disorder Functioning; GHQ-12/GHQ-28= General Health Questionnaire; HADS=

Hospital Anxiety and Depression Scale; LEE= Level of Expressed Emotion Scale; POMS= Profile of Mood States; PSSED= The Parent Satisfaction Survey of Eating

Disorders Parent Support Group; PVA= The Parent versus Anorexia Scale; SF-36= The Medical Outcome Study Short Form Scale; SPSI-R= Social Problem-Solving

Inventory- Revised. Diagnosis: AN= Anorexia Nervosa; AN-R= Anorexia Nervosa, restrictive subtype; AN-BP= Anorexia Nervosa, binge/purge subtype; BN= Bulimia

Nervosa; EDNOS= Eating Disorder Not Otherwise Specified. aIn-house questionnaire developed for the study.

bIn nine families, partners would alternate attendance.

Uehara et al.

(2001)


Relationship Mother, father,

grandmother & siblings






BN (26.9%)

EDNOS (3.8%)

Country Japan

Once a month psychoeducation

groups. Five sessions in total lasting

two hours each involving lectures

and group discussions.

Aim: psychooeducation aimed at

reducing expressed emotion

through problem solving and

solution-focussed approaches.

Carers:

-FMSS

-POMS

-ABOS

Clients:

-EDES

-GAF

The number of family members with high

expressed emotion tended to decrease. Secondary

outcome measures all improved.

Zucker et al.

(2006) N Carers (of N clients) 16

b (16)






Diagnosis AN (56%)

BN (19%)

EDNOS (25%)

Country USA

Group Parent Training Program.

16-session group treatment, weekly

90 minutes.

Aim: manage the eating disorder

with strategies whilst also offering

social support.

Carers:

-Treatment satisfaction

questionniarea

Parents reported that the intervention helped;

teach them how to manage the illness, improve

their parenting and would recommend the group

to others.

38

Group psychoeducation was offered to parents over five sessions lasting 90

minutes with the aim of improving parents understanding of eating disorders as well

as strategies for relapse prevention (Holtkamp et al., 2005). Another program, The

Parent Partner Program™ involves two sessions of three hours each to provide skills,

knowledge and support to parents based on the idea that all families have strengths to

be drawn upon (Haltom et al., 2012). The program involves lectures, video clips,

discussions and question and answer sessions with the facilitators. One parent

training intervention was based on ideas from Dialectical Behaviour Therapy such as

training parents with skills to perform effective solutions in the context of

mindfulness (Zucker, Marcus, & Bulik, 2006). Parents met weekly for 16 sessions

lasting 90 minutes each with seven to twelve people attending each time.

Two studies describe more flexible group interventions, where the groups are

held weekly and carers can attend as often as they wish. One of these open groups

was aimed at parents of outpatients (Pasold, Boateng, & Portilla, 2010). The groups

had no specific agenda but were a place for parents to discuss their experiences,

where they were provided with information on a variety of aspects of eating

disorders and guidance on how to support their loved one at home. The second study

described holding focus groups for 20 parents of previously admitted adolescent

eating disorder patients to determine the need for a parent support group (Carlton &

Pyle, 2007). Parents reported not understanding the treatment process for their loved

one and felt they lacked the necessary skills to support them once they returned

home. The focus groups led to the development of the ‘Parent Education and Support

Program’. The program included an information text on risks of eating disorders and

treatment options, a weekly parent support group to share their experiences of caring

for someone with an eating disorder and a weekly medical question and answer

39

session group, which included topics on eating disorder risks and the meaning of

eating disorder diagnoses. Parents could attend the groups as often as they wanted to

and these were attended by one to seven people at a time. Distance Learning to help

improve skills for carers has been considered by a number of other authors within the

review. Three studies used the ‘Overcoming Anorexia Online’ (OAO) intervention

developed by professionals, a carer and a recovered sufferer of anorexia nervosa, that

offers information and suggested skills to help manage their loved one’s illness along

with weekly email or telephone therapist support based on a cognitive behavioural

approach (Grover et al., 2011a; Grover et al., 2011b; Hoyle et al., 2013). The

intervention involves eight weekly online modules and weekly therapist guidance via

email or telephone. Another study considered the effectiveness of DVDs for meal

support training (Cairns et al., 2007). The DVD, along with a manual, was developed

in collaboration with families in recognition of the overwhelming nature of meal

times for families of the eating disordered. The intervention aimed to help carers to

understand the feelings of their loved ones and suggestions of helpful and unhelpful

strategies at mealtimes. The DVD also included interviews with parents and a

recovered client.

A unique medium for offering carer support was explored in one study

(Binford Hopf et al., 2013). This study considered the helpfulness of an online chat

support group for parents of adolescent anorexia nervosa sufferers involved in

various stages of family based therapy. Two to five parents met online for 15

sessions, lasting 90 minutes each. The group aimed to encourage and support parents

through the treatment, offer a space for parents to share their emotions and

discussions on strategies that might be helpful in caring for their child.

40

Only one study within the review offered individual face to face family

support via parent counselling (Abbate-Daga et al., 2013). The counselling involved

eight weekly sessions lasting an hour with an aim to help parents adopt more

adaptive coping responses and improve communication through an understanding of

the mechanisms which maintain the illness, helping to also improve family

relationships.

Finally, a RCT was conducted to determine the effectiveness of an additional

parent-to-parent session during the standard Maudsley model of family therapy

(Rhodes et al., 2008). This session involved parents meeting with another parent who

had been through the process of helping in the recovery of their loved one suffering

with anorexia nervosa. They met in the presence of a therapist between sessions three

and five of the family therapy. The therapist conducted the interview with the veteran

parent, followed by the carer asking questions at the end. The session lasted 60

minutes and was described as being an intense emotional experience, helping to

reduce feelings of isolation and offering hope that they too could reach the goal of

recovery (Rhodes, Brown, & Madden, 2009).

Outcome Measures

The outcome measures used within the studies are detailed within Appendix

A. In addition, a number of studies included questionnaires designed for the purpose

of the study to evaluate carers views of the usefulness, acceptability and helpfulness

of the intervention (Binford Hopf et al., 2013; Cairns et al., 2007; Carlton & Pyle,

2007; Gisladottir & Svavarsdottir, 2011; Goddard et al., 2011; Grover et al., 2011a;

Haltom et al., 2012; Holtkamp et al., 2005; Pasold et al., 2010; Pépin & King, 2013;

41

Sepulveda et al., 2008a; Sepulveda et al., 2008b). One study also used their own

measures to assess eating behaviours and global functioning of the care recipient

(Goddard et al., 2011).

Effectiveness of the Interventions

The following is a summary of the literature in relation to how effective the

interventions are at improving carer wellbeing and client outcomes. Mechanisms by

which the interventions might bring about changes in these outcomes will then be

discussed including; caregiving burden, coping abilities and illness

maintaining factors. Carers’ appraisals of the interventions will then be explored

followed by a synthesis of the findings.

Carers’ wellbeing.

Collaborative care skills training workshops.

Out of the six studies using the collaborative care skills training workshops,

the four with the greatest sample sizes found that the intervention led to significant

improvements in carer distress as measured by the GHQ-12 (Goddard et al., 2011;

Sepulveda et al., 2008a; Sepulveda et al., 2008b; Sepulveda et al., 2010) or the

HADS (Goddard et al., 2011). The study using the same intervention on an

Australian sample found a non significant improvement in wellbeing, as measured by

the GHQ-12, however, those scoring above the cut-off for moderate psychological

distress reduced, from 57% before the intervention, to 40% after the intervention and

this was maintained at 8 week follow up (Pépin & King, 2013). The DVD version of

42

this intervention was piloted on 16 carers. Of the 14 who completed the study their

wellbeing improved following the intervention, but there was only a trend towards

significance (p =.08) (Sepulveda et al., 2008a).

Overcoming anorexia online.

A RCT comparing OAO to a control group (usual support from Beat; an

eating disorders charity for clients and carers) found that OAO led to significant

benefits in anxiety and depression as measured by the HADS, which was maintained

at six month follow up (Grover et al., 2011a). However, only 58% of the intervention

group and 37% of the control group completed post intervention measures, possibly

due to the minimal direct contact with carers. A small study then piloted OAO as off-

line workbooks. A significant reduction in carer distress was observed, as measured

by the HADS, which was maintained at 12 week follow up (Grover et al., 2011b). A

further RCT compared OAO with and without additional guidance, in the form of

weekly email or telephone therapist support, for carers of people with anorexia

nervosa. No significant improvements were observed on the DASS or GHQ-28 for

either group (Hoyle et al., 2013). This finding may reflect the shorter time (seven

weeks as opposed to two to four months) carers had to practice the skills and

guidance being provided by a less experienced therapist than in previous evaluations

of the same intervention (Grover et al., 2011a; Grover et al., 2011b) or may be

related to poor external validity, as this study scored 0/11 on the assessment of

methodological quality.

43

Psychoeducation groups.

Five monthly psychoeducation groups aimed at reducing expressed emotion

helped improve carer distress, as measured by the POMS, although differences were

not significant (Uehara et al., 2001).

In summary, all of the studies measuring carers’ wellbeing, except one

(Hoyle et al., 2013), found improvements following a carer intervention, with the

majority reporting a significant improvement.

Client outcomes.

The impact of the carer intervention on outcomes for their loved one was

measured in seven studies. Global functioning of the client was observed to improve

significantly following carer workshops (Sepulveda et al., 2008c). The same

intervention transferred to a DVD format assessed the care recipients’ behaviours

associated with eating disorders, such as restricting food intake and secretive eating,

as measured by the carer, before and after the intervention. Surprisingly, carers who

received no telephone coaching sessions reported that their loved ones had

significantly greater improvements in eating behaviours than carers who did receive

telephone coaching sessions (Goddard et al., 2011). In addition, carers’ reports of

their loved ones functioning improved following the intervention, and continued to

improve at 3 month follow up (Goddard et al., 2011). Group psychoeducation led to

a significant improvement in observations of clients eating behaviours and non

significant improvements in bulimic-like behaviour and hyperactivity (Gisladottir &

Svavarsdottir, 2011). A similar group (Uehara et al., 2001) also lead to

44

improvements in the clients eating behaviours, as rated by their family member,

along with levels of global functioning as rated by staff.

In Abbate-Daga and colleagues (Abbate-Daga et al., 2013) study, parents

with improved coping responses following counselling had daughters with a lower

frequency of bingeing and purging than those who had not improved.

Hoyle and colleagues found that OAO led to no significant improvements on

a medical outcome measure (Hoyle et al., 2013), whilst percentage ideal body weight

did not differ whether parents received a consultation from a veteran parent or not

(Rhodes et al., 2008).

In summary, carer interventions for eating disorders appear to have some

benefits on client outcomes in terms of improvements in their global functioning and

reported eating behaviours. However, there is not yet sufficient evidence to support

the impact of carer interventions on clinical outcomes for care recipients.

Caregiving burden.

The EDSIS was validated and found to be sensitive to change following the

collaborative care skills training workshops with similar improvements to the ECI

negative (Goddard et al., 2011; Sepulveda et al., 2008b; Sepulveda et al., 2008c;

Sepulveda et al., 2010) and a non significant improvement in the DVD adaptation of

the workshops (Sepulveda et al., 2008a). The same was observed for the off-line and

on-line adaptation to OAO intervention, irrespective of whether or not carers

received additional telephone coaching sessions, (Grover et al., 2011a; Hoyle et al.,

2013). However, no significant changes were observed in the EDSIS and ECI

negative when an RCT compared the same intervention to a control group (Grover et

45

al., 2011a). The authors suggest this was due to a small sample size and large

dropout rate resulting in a lack of power to detect change.

In Binford Hopf and colleagues’ study (Binford Hopf et al., 2013), the online

chat support groups led to a significant change significant changes in the starvation

subscale and total score of the EDSIS and in only the stigma subscale of ECI

negative. Only one of the studies using the ECI (Grover et al., 2011b) found a

significant improvement on positive aspects of caregiving following the intervention,

however levels decreased back to pre-intervention levels at follow up.

In summary, a number of studies have found improvements in carers’

perceptions of the impact of their loved ones eating disorders following a carer

intervention, however, only one study showed significant improvements in positive

aspects of caregiving.

Coping abilities.

Relatively few studies aimed to measure abilities to cope with caring for their

loved one’s illness. Of those that did, changes in coping styles and carers’ self-

efficacy were examined using various measures. The collaborative care skills

training workshops studies in Australia found carers used significantly more adaptive

coping strategies following the intervention, maintained these at follow up, and there

was a trend towards a reduction in maladaptive coping strategies (Pépin & King,

2013). A DVD version of this intervention found care giving self-efficacy

significantly improved (Goddard et al., 2011). However, no changes were observed

in social problem-solving skills following the offline OAO (Grover et al., 2011b). A

parent-to-parent consultation did not bring about any significant change on parental

46

efficacy, described as the parents’ ability to take control of the illness at home to help

their child in the recovery process (Rhodes et al., 2008). This is unsurprising given

the brief nature of the intervention, which involved carers listening and reflecting to

a veteran carers’ story.

In summary, carer interventions appeared to have mixed results on the effect

of carers’ coping abilities and self-efficacy in coping results were varied. It is

possible that this is due to the variety of measures used, measuring different

constructs.

Illness maintaining factors.

Carers’ high levels of expressed emotion are considered to maintain the

eating disorder (Schmidt & Treasure, 2006; Treasure & Schmidt, 2013), so a number

of interventions aimed to reduce these.

The studies exploring the effectiveness of the collaborative care skills

training workshops revealed similar improvements on carer levels of expressed

emotion. One study used the FMSS and found that 55% of carers had high levels of

expressed emotion, which significantly dropped to 24% post intervention (Sepulveda

et al., 2010). At follow up they found that 35% of carers had high expressed emotion

which remained a significant change from baseline. The same Australian intervention

found that the number of carers high in critical comments reduced over time, but this

change was not significant. However, a significant improvement was found in carers

reporting high levels of over-involvement.

A DVD adaptation of the collaborative carer skills training workshops found

similar improvements in expressed emotion, maintained at three month follow up,

47

however, there was no further benefit of receiving additional telephone coaching

(Goddard et al., 2011). Similarly, a monthly psychoeducation group in Japan found

rates of high expressed emotion decreased significantly from 29% to 4% (Uehara et

al., 2001). However, there were no significant improvements in carer and the care

recipients ratings of levels of expressed emotion following OAO (Hoyle et al., 2013),

although a trend reduction in LEE scores was observed when the intervention was

compared to a control group (Grover et al., 2011a). The off-line version of this

intervention found a baseline of 37% of carers who rated as high expressed emotion

using the FMSS which dropped to 19% following the intervention (Grover et al.,

2011b). In contrast, 50% of carers were assessed as having high expressed emotion

according to the FQ at baseline which later increased to 66.7% following the

intervention. There were also positive changes on the LEE and FQ following group

psychoeducation, however only the subscale of ‘understanding’ showed significance

(Gisladottir & Svavarsdottir, 2011).

Accommodating and enabling behaviours that may further maintain the

illness were measured by two studies within the review. Such behaviours were

reduced following a DVD intervention aimed at reducing maintaining factors

(Goddard et al., 2011), with no further benefit if carers received additional telephone

coaching sessions. In contrast, a RCT found no difference between the intervention

OAO and a control group on accommodating and enabling behaviours (Grover et al.,

2011b).

In summary, carer behaviours believed to maintain eating disorders appeared

to significantly reduce following a number of interventions; however this was not the

case for OAO.

48

Carers’ appraisal of the intervention.

Of the studies which measured carers’ appraisals of the interventions, scores

were overall very high. The collaborative care skills training workshops were

considered easy to understand and were rated 4.91/5 on a question of whether people

would recommend the intervention to others (Pépin & King, 2013). The DVD

adaptation was rated on average 8/10 on usefulness of the information and helping

with their communication (Goddard et al., 2011).

Psychoeducation and training carer groups were on the whole reported as

useful (Carlton & Pyle, 2007; Gisladottir & Svavarsdottir, 2011; Haltom et al., 2012;

Holtkamp et al., 2005; Pasold et al., 2010; Zucker et al., 2006). In one study, 88% of

carers reported that the information helped them to cope with their child’s illness

(Holtkamp et al., 2005). In addition, 93% of carers felt the material was

understandable and 100% reported having an improved understanding of the

treatment process. Of the carers taking part in this study, 98% reported that they

would recommend the group to others. Similarly, significant changes were observed

following the psychoeducation group in relation to carers’ reported understanding of

behaviours that maintain eating disorders, knowing what treatment involves and

understanding their role in their loved one’s recovery (Haltom et al., 2012). Pasold

and colleagues (2010) study showed that greater frequency of attending the group

was also associated with greater satisfaction with the intervention. Another found

that 91% of carers strongly agreed that the group was essential for helping their child

to improve and all believed that the group helped them to manage the eating disorder,

that they had become a better parent and that they would recommend to others

(Zucker et al., 2006). Online chat support sessions were similarly well recommended

49

(Binford Hopf et al., 2013). Parents found the sessions helped them to cope with their

child’s illness and implement family therapy more effectively. Meal support training

was also deemed informative by parents (Cairns et al., 2007).

The majority of carers within the two Sepulveda studies also believed that the

interventions had helped improved their stress levels (Sepulveda et al., 2008a;

Sepulveda et al., 2008b).

Summary

Interventions aimed solely at carers of people with eating disorders on the

whole appear to improve carers’ wellbeing. There were also some reported

improvements in client functioning and eating behaviours, although no evidence was

found to support improvements in client clinical outcomes. Overall carers reported

positive views of the interventions although the way this data was collected may

have inhibited them from being more critical.

Eating disorders lead to changes in interactions between family members as

families reorganise themselves to try and support their loved one. Many of these

changes are often considered problematic, such as high levels of expressed emotion

and accommodating and enabling behaviours, as they have been shown to maintain

the illness and lead to increased carer distress and impairments in client functioning

(Schmidt & Treasure, 2006; Treasure & Schmidt, 2013).

All of the interventions described within this review offer carers one or more

of the following:

Knowledge - psychoeducation and information about eating disorders; the

risks, course and outcomes.

50

Emotional Support - allowing carers to express their feelings in a supportive

environment.

Sharing experiences - to help carers know that they aren’t alone.

Skills - teaching carers adaptive techniques to help their loved one.

Interventions that offer knowledge about eating disorders are likely to

empower carers so that they have the confidence and self-efficacy required to

effectively support their loved one. An improvement in carers’ self-efficacy may

result in a reduction in the perceived burden of caring for their loved one and thus an

improvement in the carer’s wellbeing. Supportive interventions allow carers to

express their emotions and are likely to help carers to cope more effectively with the

impact of the eating disorders and reduce strong emotions within the home

environment, linking to improvements in both the carers’ wellbeing and

improvements in outcomes for their loved ones.

Thirteen of the twenty studies involved interventions where the carers met

other carers or veteran carers, and it is likely that some of the remaining interventions

which involved DVDs, workbooks and online modules included stories from other

carers. Hearing other carers’ stories is likely to help reduce feelings of isolation,

helping the carers to feel more confident and reduce the perceived burden, which in

turn may help to improve their wellbeing (Hoyle et al., 2013). Many of the

interventions also trained carers in skills either aimed at reducing maintaining

behaviours (expressed emotion, accommodating and enabling behaviours) or general

coping skills, such as problem-solving. Developing skills in adaptive behaviours is

likely to reduce carer burden (Coomber & King, 2013, 2013) and improve carer

wellbeing (Coomber & King, 2013). The review suggests some evidence that the

51

interventions can improve client outcomes, although it is possible that studies which

measured client outcomes did not allow enough time for carers to practice skills.

Therefore, a later follow up of client outcomes is recommended. Improving carer

wellbeing is also likely to reinforce the use of adaptive responses as carers will feel

more able to put some of their learned skills into practice. The model below has been

developed to consider the mechanisms which may have brought about these changes

in carer and client outcomes (Figure 3). It is worth nothing that the associations

between factors, including those that are empirically supported, cannot be assumed to

be causal.

Figure 3. Proposed model of mechanisms of carer interventions for eating disorders.

52

Considering which interventions are likely to be more or less effective is

beyond the scope of this current review, however it is likely that the most effective

interventions include all of the core ingredients of offering knowledge, support, a

space to share experiences as well as teaching skills aimed at improving coping and

reducing behaviours known to maintain the illness.

Discussion

The current review aimed to determine whether interventions for carers of

people with eating disorders help to improve their wellbeing and outcomes for their

loved ones, and consider their appraisals of these interventions. On the whole, the

studies included within this review suggest that these interventions are useful at

improving carer distress and some limited evidence to suggest that they can also

positively impact on their loved one. In addition, carers appraise these interventions

as helpful and agreed that they improved their skills and reduced their stress levels.

A variety of interventions have been described, however they all appear to

offer at least some, if not all, of the following ingredients; knowledge of eating

disorders, support, sharing experiences with other carers and learning new skills to

help care for their loved one. These factors appear to increase carers’ confidence and

self-efficacy, reduce perceptions of carer burden, which in turn leads to more

adaptive responses of reducing illness maintenance behaviours and putting new skills

into practice. I propose that it is these mechanisms that lead to a reduction in carer

distress and improvements in client outcomes. However, a number of studies found

either no changes, possibly explained by poor methodological quality, or non-

significant improvement, perhaps due to small sample sizes resulting in insufficient

53

power to detect effects. In addition, client outcomes were frequently rated by the

carers so should be considered with caution as carers are likely to expect these

outcomes to improve following the intervention, and may be inhibited in reporting

less positive outcomes.

A number of limitations to this review need to be considered within the

context of these results. Overall the studies included within the review were of low

methodological quality, particularly due to small sample sizes and only two of the

studies reported that they had conducted power analyses (Grover et al., 2011a;

Grover et al., 2011b). The majority of studies either failed to report sampling

methods or used convenience samples, limiting the ability to generalise their findings

and the possibility that the samples are not representative of the whole eating

disorders population. Only four of the studies included a control group (Carlton &

Pyle, 2007; Goddard et al., 2011; Grover et al., 2011a; Rhodes et al., 2008). Studies

lacking a control group fail to rule out alternative explanations for their findings,

such as the effects of adjunctive treatments that carers and their loved ones may also

have been receiving. The majority of studies reported carers who dropped out of the

study, however only one study compared drop outs to completers (Abbate-Daga et

al., 2013). It is likely that those that drop out of the study are more likely to have

found the intervention unhelpful. In addition, none of the studies in the review

examined differences between those who agreed to take part and those who did not.

It is possible that those who agreed to take part were more motivated and engaged in

the intervention, leading to improved scores. Five of the six studies using the

collaborative care skills training workshops came from the site where the approach

originated from, possibly leading to a bias from allegiance effects. Carers may also

have felt pressured into rating interventions positively to the team who delivered it,

54

and it was unclear from the studies whether these measures were completed

anonymously. In addition, a number of studies used more than one carer of the same

client (e.g. mother and father) causing problems associated with a lack of

independence. Finally, the majority of studies failed to fully describe their sample

characteristics. A number of the studies did not report the relationship of the carer or

the characteristics of the carers, such as age and gender. Most of the studies reported

the age of their loved one, however just over half of the studies failed to report the

clients’ gender. It is also worth considering that several studies were missed from

this review due to being written in a language other than English and limitations of

databases providing all possible articles. In addition, studies reporting non-significant

findings are less likely to be published due to publication bias, and therefore were not

considered within this review.

A number of confounding variables were not controlled for, which was

reflected in the low quality assessment ratings. Client factors including; diagnosis,

age, inpatient vs. outpatients, gender and illness duration, as well as carer factors

including; how they are related, age, gender, education and employment history, and

amount of contact time all may have influenced results. For example, one study

found that relatives who lived with their loved one had greater benefits from the

carer intervention (Sepulveda et al., 2008a). In addition, greater adherence to the

intervention led to improvements in expressed emotion, accommodating and

enabling behaviours (Goddard et al., 2011).

This review is of importance as it supports the cognitive-interpersonal

maintenance model of anorexia nervosa (Schmidt & Treasure, 2006; Treasure &

Schmidt, 2013), as interventions aimed at educating and offering skills to carers to

reduce behaviours that are considered to maintain the eating disorder, have led to

55

improvements in client outcomes. Considering carers’ wellbeing is also important so

that they can continue to support their loved one and not become unwell themselves.

Therefore, it would appear that carer interventions are a useful adjunct to the

treatment of eating disorders. Carer interventions should consider the core

ingredients of helping carers to improve their knowledge and develop specific skills

to reduce the maintenance of the eating disorder and improve their ability to cope,

within an environment of offering emotional support and a chance to share

experiences with one another.

Future research should consider improving the quality of the interventions

and using control groups of carers who receive treatment as usual. In addition,

studies should look at the impact on client outcomes, including eating disorder

symptoms, and longer follow up periods, allowing time for carers to practice the

skills they develop as a result of the intervention. In fact, research is currently

underway that considers all of these factors, comparing ECHO with treatment as

usual on carer distress and time until relapse post-discharge with a follow-up period

of a year (Goddard et al., 2013). Further RCTs would help to support the use of carer

interventions. It may also be worthwhile researching some of the direct links from

the proposed model, such as whether improving adaptive responses directly improves

carer wellbeing. Evidence should also compare group workshops, individual support

and self-help in terms of outcomes for both the client and the carer whilst also

determining optimal length of treatment. It would also be beneficial for research to

focus on determining the most cost-effective approach of delivering these

interventions to support their inclusion within guidelines for the treatment of eating

disorders.

56

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70


The Effect of Visuospatial, Verbal and Somatic Tasks on

the Post-Meal Experience of Hospitalised Patients with

Eating Disorders

71

Abstract

Aims: This study compares the effects of various tasks on post-meal

negative affect of hospitalised patients with eating disorders. Other

investigated effects include positive affect, intrusive thoughts,

intrusive images, difficulty in coping and perceived task helpfulness.

Methods: Twenty-two participants were recruited from an eating disorder

inpatient ward, rehabilitation unit and day hospital and were

randomised to one of four tasks for 15 minutes: the game ‘Tetris’

(visuospatial), a general knowledge ‘Quiz’ (verbal), ‘Braille’

translation (somatic) and ‘Sitting Quietly’ (control). Immediately

following meals, over a two or four week period, participant’s

accessed the tasks and pre-post questionnaires online.

Results: The visuospatial, verbal and somatic tasks had beneficial effects on all

positive and negative indicators, when compared with a non active

control condition. Visuospatial and somatic tasks were more effective

at reducing intrusive imagery than the verbal task.

Conclusions: The results suggest that engaging activities can help hospitalised

patients with eating disorders manage the difficult post-meal period.

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Introduction

The Post-Meal Experience

Mealtimes can be an extremely anxiety provoking time for those with an

eating disorder (American Psychiatric Association [APA], 2000) resulting in

symptoms of both anxiety and depression (Lawson et al., 2013). Even just thinking

about food has been shown to result in negative affect for people with anorexia

nervosa and bulimia nervosa (Rawal, Williams, & Park, 2011; Shafran & Robinson,

2004; Shafran, Teachman, Kerry, & Rachman, 1999), and the sight of food can also

elicit feelings of disgust and fear in women with abnormal eating attitudes (Harvey,

Troop, Treasure, & Murphy, 2002). The time after meals can leave people feeling

distressed as they consider the food they have just eaten (Shapiro et al., 2008). Post-

meal anxiety levels have also been shown to correlate with body mass index (BMI),

with lower BMI associated with the greatest anxiety (Robinson et al., 1983).

People with eating disorders can also feel physically uncomfortable during

the post-meal period (Sharp & Freeman, 1993), due to delayed gastric emptying

(Hadley & Walsh, 2003; Holt, Ford, Grant, & Heading, 1981). Some describe feeling

physically sick and unable to fit more food in (Long, Wallis, Leung, & Meyer, 2012).

These factors are likely to increase anxiety around mealtimes.

Due to the psychological and physiological experiences at mealtimes, it is not

uncommon for patients to elicit unusual behaviours such as the concealment of their

food and to experience a desire to compensate for eating, through purging and

exercising (Tappe, Gerbery, Shide, Andersen, & Rolls, 1998). As the primary goal of

eating disorder inpatient units is to help patients gain weight and improve their eating

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behaviours, these unusual and compensatory behaviours require some degree of

management (Geller, Williams, & Srikameswaran, 2001). Therefore, inpatients are

frequently supervised and restricted in their activities following meals, which is

likely to heighten their levels of distress and discomfort.

Current Post-Meal Interventions

National Institute of Clinical Excellence (NICE, 2004) guidelines in the UK

acknowledge that eating disorder services vary widely in their service delivery, with

inpatient units having no standardised guidelines for how to implement mealtimes.

Most rely on clinical judgement to determine how they should conduct mealtimes

(Gowers et al., 2002). A study assessing mealtime practices in the UK found that

almost half offered a post-meal activity (Long, Wallis, Leung, Arcelus, & Meyer,

2012). Activities varied between and within-units and included; individual

supervision, community meetings, support groups and specific meal-related

reflection.

Only two studies have put forward suggestions of specific activities that

might be useful during the post-meal period, both of which have aimed to reduce

anxiety. Breiner (2003) described positive feedback from service users and staff

within an eating disorder unit when arts and crafts activities were used as post-meal

distractions, such as fabric painting, bracelet making and sculptures. Unfortunately

no formal evaluations were used in this research, limiting the validity of their

findings.

Alternatively, relaxation techniques used after meals, such as progressive

muscle relaxation, guided imagery and self-directed relaxation have shown to be

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effective in reducing anxiety, feelings of fullness and thoughts about weight

following meals (Shapiro et al., 2008). However, the treatment as usual group in this

study, which involved choosing an activity of their choice such as reading, word

puzzles or arts and crafts, also showed positive outcomes, which may reflect a

similar benefit to relaxation. These exploratory and relatively descriptive studies

provide some evidence for the benefit of engaging in activities during the post-meal

period, although the evidence is limited due to poor methodological quality and

lacking a theory driven approach. Reports from the clinical experience of staff within

one inpatient unit confirm that distracting activities, such as puzzles and board games

have helped children and adolescents with eating disorders delay difficult thoughts

and urges during the post-meal period (Leichner, Standish, & Leichner, 2005).

Feeling Fat

The underlying processes that underpin post-meal distress in people with

eating disorders are not fully understood. What is known is that people with eating

disorders repeatedly report feeling fat and disliking the feeling of fullness (Fairburn,

2008). They often equate the feeling of fullness with being fat (Fairburn, 2008) and

serves as a diagnostic criteria for anorexia nervosa (APA, 2000). However, feeling

fat is believed to be more than just a perception of being overweight (Tiggemann,

1996). Feeling fat has been associated with distress, bodily sensations and images

(visual, auditory, olfactory, movement and tactile) and negative self-beliefs (Cooper,

Deepak, Grocutt, & Bailey, 2007; Cooper, Todd & Turner, 2007). When describing

the last experience of feeling fat typical thoughts reported by people include ‘I am

fat’, ‘I am bloated’, ‘I am overweight’ with people with anorexia nervosa finding

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these thoughts more distressing and more true than a group of dieters and a group of

non-dieters (Cooper, Deepak, Grocutt, & Bailey, 2007). It is these automatic

negative thoughts which are often challenged within cognitive therapy for eating

disorders (Andersen, 2007). Visual images were similar among the groups and

included imagining themselves walking down the street looking bigger than others,

or imagining pictures of thin people. Bodily sensations were also similar among the

groups and included the sensation of their blood slowing down or feeling their

waistline pressing on their body.

One theory suggests that feeling fat results from a misinterpretation of

particular emotions of depression, anxiety or guilt and bodily sensations of feeling

full, bloated, sweaty (Fairburn, 2008; Murphy, Straebler, Cooper, & Fairburn, 2010).

These sensations then lead the individual to develop cognitions, which they may

perceive as reality – specifically, the feelings are misinterpreted as being or

becoming fat. This is akin to thought-shape fusion, a cognitive distortion commonly

associated with eating disorders where merely just thinking about food leads to the

person thinking they are fat and feeling fat ( Shafran et al., 1999). This process may

be similar to what is seen in anxiety disorders in that a social phobic might

misinterpret the bodily sensation of anxiety, imagine their cheeks are bright red and

then believe that this is the case.

Considering this theory, it is possible that distress after mealtimes (the

experience of feeling fat) is a result of misinterpreting bodily sensations, such as the

stomach stretching, which leads to a variety of images such as an overly expanded

stomach. This is then viewed as evidence for the feared catastrophe: rapid weight

gain. Therefore, one possible way to reduce distress during the post-meal period may

involve interrupting the processing of feeling fat either through interrupting intrusive

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imagery, intrusive thoughts or somatic experiences. Studies within the Post-traumatic

Stress Disorder (PTSD) literature have considered a similar approach of interrupting

intrusive imagery to reduce later flashbacks and are discussed below.

Intrusive Imagery and Working Memory

Intrusive imagery is a distressing and common feature of many mental

disorders (Harvey, Watkins, Mansell, & Shafran, 2004). Intrusions are spontaneous

and involuntary retrievals of real or imagined events (Brewin, Gregory, Lipton, &

Burgess, 2010).

A working memory approach has been used to understand mental imagery

(Baddeley & Andrade, 2000). The model consists of the central executive system

which coordinates two subsystems: the visuospatial sketch pad storing visual and

spatial information, and the phonological loop storing verbal and auditory

information (Baddeley & Hitch, 1974). As these subsystems have limited capacity,

concurrent modality specific processing, such as engaging in visual or verbal tasks

has been shown to disrupt representations held in these associated systems (Baddeley

& Andrade, 2000). For example, a tapping task, which loads on the visuospatial

sketchpad, reduced the vividness of visual images of recently presented novel

patterns. In the same study, a counting task, loading on the phonological loop,

reduced vividness of auditory images (Baddeley & Andrade, 2000).

Trauma flashbacks are a type of intrusive memory common in PTSD. Eye

movement desensitisation and reprocessing (EMD-R) has shown to help people with

PTSD (Shapiro, 1989). One theory suggests that EMD-R reduces the vividness of

distressing images by disrupting processing within the visuospatial sketchpad of

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working memory (Andrade, Kavanagh, & Baddeley, 1997). To test this theory,

healthy participants were asked to imagine distressing events whilst performing eye

movement and spatial tapping tasks (Andrade et al., 1997). When engaging in these

visuospatial tasks participants reported a reduction in distressing imagery and their

emotional impact.

Brewin and colleagues, (Brewin, Dalgleish, & Joseph, 1996) proposed the

dual-representation theory to explain the nature of trauma flashbacks in PTSD. They

suggest that there are two memory systems in which trauma memories are processed,

thereby creating two separate representations. The verbally accessible memory

(VAM) system processes conscious trauma experiences that can be deliberately

retrieved. These VAM memories only hold information that has consciously been

attended to. Non-conscious memories are processed in the situationally accessible

memory (SAM) system, which cannot be voluntarily accessed. The theory suggests

that only external environmental reminders, or internal mental processes, trigger

intrusive images of the trauma. Encoding into the VAM requires verbal processes

whilst the SAM system involves visuospatial encoding.

Therefore, the dual-representation theory would predict that verbal tasks will

interfere with verbal processing of traumatic memories, thus increasing intrusion

frequency, whilst a visuospatial task will decrease intrusion frequency by interfering

with the processing of visuospatial flashback memory consolidation (Brewin &

Saunders, 2001). Studies using the trauma film paradigm have tested this prediction

out.

The trauma film paradigm allows a prospective experiment to investigate

how intrusions can be manipulated through cognitive mechanisms (Holmes &

Bourne, 2008). Healthy participants watch a traumatic video and later record their

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intrusive memories. Participants performing a visuospatial tapping task during the

film reported significantly fewer intrusive memories than a non-task control

condition (Brewin & Saunders, 2001; Holmes, Brewin, & Hennessy, 2004), whereas

a verbal distraction task (counting backwards in threes) has shown to increase

memory intrusions (Holmes et al., 2004). These findings support the dual-

representation theory. In addition, a visuospatial task which involved participants

making shapes from modelling clay, whilst watching a traumatic video, again led to a

reduction in later intrusive memories of the film (Stuart, Holmes, & Brewin, 2006).

To prevent the development of PTSD flashbacks, a ‘cognitive vaccine’ has

been proposed (Holmes, James, Coode-Bate, & Deeprose, 2009). The researchers

considered using a visuospatial task after the traumatic film, followed by participant

recordings of later flashbacks. The computer game Tetris, in which players are

required to rotate falling geometric shapes to form horizontal lines, was used as a

good example of a fairly pure visuospatial task (Green & Bavelier, 2003). Holmes

and colleagues (2009) used Tetris as a task that might compete for resources with

trauma flashbacks, compared with a control condition, and asked participants to keep

a diary of their flashbacks for one week. Those in the visuospatial condition reported

significantly fewer flashbacks. A further study found that a verbal quiz appeared to

increase flashbacks in the following week (Holmes, James, Kilford, & Deeprose,

2010). They attributed their findings to the dual-representation theory, the verbal task

prevented participants from verbally processing the trauma video. They also

described their findings as evidence that the Tetris game was not simply a distraction

of attention from the traumatic material.

Pearson and Sawyer (2011) showed traumatic images to participants and

found that irregular tapping was equally as effective as the verbal task of generating

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random numbers for reducing later intrusions. As only the more challenging (higher

executive load) tasks significantly reduced intrusions they reported that the tasks

created demand on the central executive component of working memory (Baddeley

& Hitch, 1974). Their findings contradicted the results of Holmes and colleagues

(Holmes et al., 2010), who found that a verbal task increased flashbacks. This may

reflect a difference in their choice of verbal task, as generating numbers may not

have loaded on the visuospatial component of working memory to the same extent as

a verbal quiz; therefore only impacting on the central executive component.

Interrupting Processing of Feeling Fat

The PTSD literature suggests that certain tasks affect processing of traumatic

material and reduce intrusive imagery. Specifically the evidence suggests that

visuospatial tasks reduce intrusive imagery whilst verbal tasks increase it, supporting

the dual-representation theory (Holmes et al., 2009, 2010). However, some evidence

also supports the view that tasks are simply a useful distraction which create demand

on the central executive component of working memory (Pearson & Sawyer, 2011),

limiting its capacity to process other information (Baddeley & Hitch, 1974).

On an eating disorder unit, mealtimes and the post-meal period are known to

be particularly difficult times for patients, possibly because the experience of ‘feeling

fat’ is at its greatest. It may be possible to interrupt the processing of feeling fat using

a similar approach to that used within the PTSD literature, either using a visuospatial

task that may interrupt processing of intrusive imagery, a verbal task to interrupt

processing of intrusive thoughts or a somatic task, which may interrupt processing of

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somatic experiences within the body. This may shed light on suitable activities to

help with the difficult post-meal experiences within eating disorder units.

Aims and Hypotheses

The primary aim of this study is to compare a control condition (sitting

quietly) with visuospatial, verbal and somatic tasks on self reported negative affect,

during the post-meal period, within an eating disorder unit. Secondary aims are to

examine self-reported changes in positive affect and perceived post-task levels of

intrusive thoughts, intrusive imagery, difficulty in coping, and helpfulness of the

tasks. Perceived task enjoyment, difficulty and ability to focus will also be compared

for each task and considered as potential moderators of negative affect.

The hypothesis is that all of the tasks will help with the post-meal experience

compared to the control condition by reducing negative affect, increasing positive

affect and improving levels of intrusive thoughts, intrusive imagery, difficulty in

coping and task helpfulness. As this is a novel paradigm it is unknown whether one

task will be more helpful than another. However this study may highlight

mechanisms for ‘feeling fat’ by revealing whether one kind of task interrupts

distressing post-meal processing more successfully than another and provide

evidence of how best to clinically help patients during this difficult time.

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Method

Participants

Participants were recruited from three hospital units within the same eating

disorders service: an inpatient ward, a rehabilitation unit and the day hospital. Day

patients at the rehabilitation unit were not invited to take part as they were only in the

service to attend appointments and groups and were often not available at mealtimes.

Participants were required to be between 18-65 years old and were excluded if they

were unable to speak English fluently, had a moderate to severe learning disability,

were on bed-rest or were imminently being discharged. Participants could have any

diagnosis seen within the service (most commonly anorexia nervosa, and eating

disorders not otherwise specified, but occasionally severe cases of bulimia nervosa).

All eligible participants were invited to take part in the research, conducted between

September 2013 and April 2014.

Setting

The Eating Disorders unit comprises of; inpatient treatment, a stepped down

residential facility, day hospital treatment and outpatient treatment. There are

approximately 1,000 referrals and 650 patients in treatment a year. An audit of the

service found that between 2006 and 2011 there were 278 inpatient admissions of

whom 86% (240) had a primary diagnosis of anorexia nervosa, 6% (17) severe

bulimia nervosa and 8% (21) with eating disorders not otherwise specified

(Lawrence, Kyrtatos, Friddin, & Johnson-Sabine, 2011). Almost all admissions were

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female (95%), the average age was 30 and the average body mass index (BMI) at

admission was approximately 14.

During their stay, patients from the ward and rehabilitation unit are

supervised eating three meals and two snacks a day, seven days a week, unless they

are granted leave. Following meals, ward patients either attend therapy groups or are

supervised for 30 minutes, in a communal room, where they are free to watch

television or engage in activities such as reading and knitting. Patients within the

rehabilitation unit are supervised less strictly following meals, and are free to return

to their room, although a member of staff remains on site. Day hospital patients

typically arrive at the hospital at 10am and leave between 3-4pm. They are only

supervised eating lunch, after which they engage in a 30 minute informal group

reflective discussion, facilitated by staff. Participants did not attend the group

reflective discussion when taking part in the research.

Design

This study is a within-subjects design. Following their meal (breakfast, lunch

or dinner) whilst on the unit, participants were assigned to one of four tasks; either a

visuospatial, verbal or somatic task, or a control condition. Each task lasted 15

minutes. Participants within the inpatient ward and rehabilitation unit completed each

task three times, over a two-week period, and were free to choose whether they

completed the task following breakfast, lunch or dinner. Day hospital participants,

who could only complete the tasks following lunch, were given one month to

complete the study. In total, participants completed 12 post-meal tasks.

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So that participants could complete the study in their own time, an online

programme was developed where participants’ responses were submitted to an online

password protected database.

Tasks

The visuospatial and verbal tasks were similar to those used in studies

conducted by Holmes and colleagues (Holmes et al., 2009, 2010), and only differed

so that the tasks could be accessed online.

1. Visuospatial task - Tetris

The visuospatial task required participants to play the computer game Tetris

(http://www.palmantics.com/games/tetris/). This was a slightly different version to

the one used in the Holmes and colleagues study (Holmes et al., 2009, 2010) so that

the game could be played online and free from adverts. The scoring system and

number of levels were the only differences between the two versions.

Participants were required to use the cursor keys to rotate falling geometric

blocks with the aim of creating a complete horizontal row of blocks at the bottom of

the screen. Following an accumulation of ten complete rows, the game progresses to

the next level where the blocks fall faster until they reach level ten where they can

progress no further. The game stops when the blocks reach the top of the screen. If

this happened within 15 minutes, participants are asked to restart the game. Scores

throughout the game were visible to participants only (see Appendix B for a screen

shot of the game).

http://www.palmantics.com/games/tetris/

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2. Verbal task – Quiz

The verbal task involved participants completing a computerised general

knowledge Quiz, designed specifically for the study. A spreadsheet of questions and

answers were obtained online. The quiz used in the Holmes and colleagues study

(Holmes et al., 2010) was only accessible offline. Essentially the games were

identical except for the aesthetics of the programme design, with the one used in this

study having a simple plain background with no animation or images, and the

questions themselves were different, although on similar general knowledge topics.

Participants were required to select one answer from four possible choices at a time

on various general knowledge topics. Questions relating to food and drink were not

included as they may have increased food and body-related experiences. Following

each response, participants received feedback on whether they answered correctly,

but were not given a total score at the end. Three separate quizzes were used for each

session1, with over 700 questions in each (enough to ensure that participants would

not finish the Quiz within 15 minutes). Participant responses and response times for

each question were submitted to the online database (see Appendix C for a screen

shot of the Quiz).

3. Somatic task - Braille

The somatic task involved participants using their fingertips to translate a

random list of Braille letters into letters of the English alphabet. An A4 sheet of up to

143 Braille letters were placed within a sealed box that participants could put their

hand inside, so that they would be unable to see the Braille. The Braille letters were

arranged using an online random letter generator. On top of the box was a key card

1 Throughout the empirical paper ‘session’ refers to one of the three occasions they completed the

same task, whilst ‘trial’ refers to any one of the twelve occasions they completed the tasks.

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so that participants were able to translate the letters. They were also provided with an

answer sheet, which had a choice of three possible answers for each letter. A separate

box and answer sheet were used for each session of the task, with a new

randomisation of letters. Participants were not given feedback on how well they were

doing, although they could see how many items they had completed and how many

were remaining. If they completed the sheet within 15 minutes they were asked to

check over their answers until the time elapsed (see Appendix D for photographs of

the materials used in this task).

4. Control – Sitting Quietly

For this task participants were asked to remain seated, and not engage in any

activities, such as talking to others or reading. However, if participants found it

particularly difficult to cope with the post-meal experiences during this time then

they could engage in any activity that they found helpful. At the end of the task the

online programme asked participants a question as to whether they were able to sit

quietly for the duration of the task, and if not they were asked to describe what they

did instead.

Piloting

The Tetris, Quiz and Braille tasks were initially piloted on four people to help

finalise their details. They were aged between 27 and 30, and all educated to degree

level. Feedback that the Quiz questions were too hard resulted in the final version

consisting of a series of about 80 easier questions to begin with. In addition, it was

deemed more straightforward to use the keys 1-4 than to choose each answer with

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the cursor. The Braille was initially put in an envelope, for participants to place their

hand inside, however feedback suggested this was awkward. The sheet of Braille

letters were therefore secured to the inside of a cardboard box file for easier access.

The Braille task originally required the participant to translate each letter from the

possible 26 letters of the alphabet; however, this design was deemed too difficult and

frustrating. Therefore the score sheets were adjusted so that participants had a choice

of three possible letters to choose from. Piloted individuals also reported easily

losing their place and therefore, tactile markers (paper fasteners) were used to help

participants differentiate each line of letters. The Tetris game was considered

relatively easy compared to the other tasks, so following the initial pilot we requested

participants start at Level 5.

Following these changes the tasks were then piloted on four additional people

to ensure consistency in ratings of task enjoyment and difficulty. Those that were

piloted were asked how much they enjoyed the task and how difficult they found the

task using a Likert scale from 1, very slightly or not at all, to 5, extremely. Tasks

were deemed similar enough if they did not vary by more than 2 points for each

question. Table 1 shows that there was little variation in mean scores, so no further

changes were made to the tasks.

Table 1

Piloted Participants Ratings

Measure Tetris Quiz Braille

Enjoyment, mean 3.25 2.50 3.50

Difficulty, mean 2.25 3.50 3.25

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Measures

Positive and Negative Affect Scale (PANAS)

The PANAS (Watson, Clark, & Tellegen, 1988) consists of 20 items of

positive and negative affect. Each item requires the respondent to rate from very

slightly or not at all (1) to extremely (5) of how much they are feeling each item at

that very moment. To score the positive affect a total of 10 items are summed, with

higher scores representing greater positive affect. Sample items include: interested,

excited and strong. To score the negative affect, a total of 10 items are summed, with

higher scores representing greater negative affect. Sample items include: distressed,

upset and guilty. The PANAS was completed by participants immediately before and

after each trial of the task to measure changes in affect. The measure has been

validated among adult samples, with alpha coefficients ranging from 0.84 to 0.90

(Watson et al., 1988).

Post-task questionnaire

A questionnaire was designed for the purpose of the study (see Appendix E).

The questionnaire was presented online, following completion of the task and the

post PANAS questionnaire. Using the same rating scale as the PANAS, participants

were asked to measure the intensity of body and fatness related intrusions they

experienced during the task (‘intrusive thoughts’ and ‘’intrusive images’), how

difficult they found coping during the task (‘difficulty coping’) and how much they

found the task helped with the post-meal experiences (‘helpfulness’). They were also

asked, using the same rating scale how much they enjoyed the task (‘enjoyment’),

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how difficult they found the task itself (‘difficulty’) and how much they were able to

focus on the task (‘focus’).

Eating Disorders Examination Questionnaire (EDE-Q)

The EDE-Q (Fairburn & Beglin, 1994) is a 28-item self-report questionnaire

assessing eating disorder attitudes and behaviours. Questions require respondents to

rate how often over the past four weeks they have had a particular attitude or

engaged in a particular behaviour, for example ‘Have you had a strong desire to lose

weight?’ and ‘How dissatisfied have you been with your weight?’ Means are

calculated based on certain questions to create the following subscales: restraint,

eating concern, weight and shape, with scores ranging from 0-6. A global score can

be calculated by taking an average of the subscales. The EDE-Q has shown to have

good internal consistency within a community sample, with an alpha coefficient of

0.9 for the total score (Peterson et al., 2007), good concurrent validity and acceptable

criterion validity (Mond, Hay, Rodgers, Owen, & Beumont, 2004).

Patient Health Questionnaire (PHQ-9)

The PHQ-9 is a self-report, 9-item measure of depression over the last two

weeks (Kroenke, Spitzer, & Williams, 2001). Respondents rate how much each

symptom is bothering them on a scale from not at all (0) to nearly every day (3).

Example items include: ‘Little interest or pleasure in doing things’ and ‘Feeling

down, depressed or hopeless’. Each item is summed to give a total score. The PHQ-9

has been shown to have good reliability and validity (Kroenke et al., 2001).

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General Anxiety Disorder assessment (GAD-7)

The GAD-7 is a self-report, 7-item measure of anxiety over the last two

weeks (Kroenke et al., 2007). Rating and scoring is the same as the PHQ-9. Example

items include ‘Feeling nervous, anxious, or on edge’ and ‘Not being able to stop or

control worrying’. It has been shown to be a reliable and valid measure of anxiety in

the general population (Löwe et al., 2008).

Procedure

All eligible participants were approached and invited to an initial one-to-one

meeting, lasting approximately 30 minutes, to discuss the research. Posters were also

displayed within each unit highlighting the nature of the research (see Appendix F).

Those who expressed an interest were provided with an information sheet (see

Appendix G). During the initial meeting, details of the study were discussed and

there was an opportunity for participants to ask questions. Participants then

completed a consent form (see Appendix H). A time was then arranged to meet again

to practise the tasks. Following informed consent, information on participants’

demographic data (age, ethnicity, occupation, diagnosis, illness duration and current

time at the unit), body mass index and routine clinical measures (EDE-Q, GAD-7

and PHQ-9) were taken from their records and the responsible clinician was

informed of their participation in the study (see Appendix I for clinician information

sheet and Appendix J for letter to clinician).

Participants accessed the online programme using a laptop and dongle (to

access the internet). Participants without their own personal laptop or dongle were

provided with one for the duration of the study. During the second meeting,

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participants familiarised themselves with the online programme and practised

completing the online questionnaires and tasks. This meeting lasted approximately

half an hour. They were each given a folder that included instructions for the study

(see Appendix K) and answers sheets for the Braille task (see Appendix D).

Participants were reminded that they needed to complete the online programme on

12 separate occasions following their meals within a two week period (one month for

day hospital participants).

Immediately following any of their meals whilst on the unit, when they had

no other scheduled activity or appointments, participants accessed the online

programme. Participants on the ward were required to complete the programme

whilst in the supervised communal area and participants from the rehabilitation unit

could use the lounge or their bedroom. Participants from the day hospital did not

attend the informal group reflection so that they could participate in the study,

usually in another room. The online programme began by asking which meal they

had just eaten followed by the PANAS. At this point they were told whether they

were randomised to the Tetris, Quiz, Braille or Sitting Quietly task. If they were

randomised to the Braille task they were reminded to have the box and answer sheets

ready in front of them. Both the Tetris and Quiz tasks were completed within the

online programme. For the Braille task and Sitting Quietly task they were presented

with a blank screen. They then completed the task that they were randomised to for

15 minutes. Each task included a count-down timer at the top of the screen and a

brief alarm to signal the end of the task. The Tetris and Quiz tasks would then

automatically stop. Participants then completed the PANAS again and the post-task

questionnaire. Finally, participants had the option of reporting any problems they had

encountered whilst completing the online programme via a comments box. Any

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problems that were deemed to have a significant impact on the trial led to a removal

of that trial’s data from the analysis.

Participants on the ward or rehabilitation unit would repeat this procedure

following any 12 meals (breakfast, lunch or dinner) of their choice, as long as they

were on the unit and did not have any other scheduled activity, over a two week

period. Participants at the day hospital repeated the procedure following any 12 of

their lunches over a month. Participants’ progress was reviewed up to twice a week,

to ensure any difficulties were promptly resolved. In the event of participants on the

ward or rehabilitation unit being unable to complete the study in two weeks, due to

unforeseen circumstances (such as sickness) they were given the option to continue

the study for up to two additional weeks.

Randomisation

Participants were randomised to the tasks using the Latin Square method

(Dénes, 1974). This ensured that each participant completed each task three times, in

a random order. Furthermore, across participants, each task was equally likely to

occur for each of the twelve trials.

Power Analysis

This study used a quantitative within-subjects design. The primary focus was to

determine the effect of various tasks on post-meal experiences, compared to a control

condition. Therefore within-subjects paired sample t-tests comparing treatment to

control conditions was used. An effect size of d=1.16 was calculated from previous

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literature (Holmes et al., 2010) using the same intervention. For 80% power to detect

this effect at alpha of 0.05, a sample of 24 (8 per pairwise comparison) was

required. This was calculated using G*Power (Faul, Erdfelder, Lang & Buchner,

2007).

Statistical Analyses

For the primary outcome (change in PANAS negative) and secondary

outcomes (change in PANAS positive, intrusive thoughts, intrusive images, difficulty

in coping and perceived helpfulness of the task) repeated measures ANOVAs were

used, with within-subjects factors of task and session (either the 1st, 2

nd or 3

rd time

they completed the task). In addition, a repeated measure ANOVA was also used

when comparing task performance across the three sessions. Where the assumption

of sphericity was violated the Greenhouse-Geisser correction was applied. Finally, a

Pearson’s correlation was applied when comparing PANAS negative with other

outcome variables. Participants who completed fewer than 75% (9/12) of the trials

were excluded from the study. Those who completed more than 75% but did not

complete the study were included within the analysis.

Ethics

Participants were advised to seek support from staff if they found their levels

of anxiety increased following tasks. During the control condition, participants were

explicitly told that they could opt out of this task if they were feeling particularly

anxious and engage in anything that might help them cope, including seeking support

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from staff. Ethical approval was obtained from NRES Committee London – Harrow

(Reference 13/LO/0800, see Appendix L for letter of approval).

Results

Participant Flow

The flow of participants through the study is shown in Figure 1. Of the 48

patients who were suitable and invited to take part in the study, 32 (67%) agreed and

signed a consent form. Subsequently eight participants failed to begin the study,

whilst two completed fewer than 75% of trials. This lead to 10 drop outs (31% of

those who signed the consent form) versus 22 ‘completers’, who were included in

subsequent analyses. Only two of the ‘completers’ were unable to complete all trials

as one was discharged from the hospital before she could finish, and the other did not

complete the final trial within the allocated time-frame. One of the participants had a

naso-gastric feeding tube, and was administered meals via the tube at the same time

as other patients on the unit ate their meals.

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Figure 1. Flowchart of participants through the study.

Clinical and Demographic Data

Clinical and demographic data on those who completed and those who

dropped out of the study are described in Table 2. Two participants from the

‘completers’ group and one participant from the ‘drop out’ group did not complete

the PHQ-9, GAD-7 and EDE-Q measures. There were no differences between these

two groups for hospital unit, age, gender, diagnosis, BMI on admission to hospital,

length of current stay in hospital at point of commencing the study, PHQ-9, GAD-7

and EDE-Q scores. However, there were differences between ‘completers’ and ‘drop

outs’ in relation to ethnicity, employment status and duration of their illness. Those

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who dropped out of the study were almost twice as likely to be White British, far

more likely to be unemployed and to have had their diagnosis for over twice as long

as those who remained in the study.

Data Removed from the Analyses

Trials that were completed outside of mealtimes were removed from

analyses. A window of two hours was allowed for participants to complete the study

to accommodate for variations in meal-times on the units, i.e. breakfast trials needed

to be completed between 8.30am-10.30am, lunch trials needed to be completed

between 12.30pm-2.30pm and dinner trials needed to be completed between 6.00pm-

8.00pm. This led to removal of three trials from two participants. In addition, one

trial of one participant was removed due to reports that the Tetris game was not

working. Participants were asked to describe any problems that affected their ability

to complete the task. On six occasions participants reported delays in commencing

the study due to needing to charge the laptop battery, or system updates. As there

was no measure of how long these delays lasted for, these trials were kept within the

analyses. No other problems were reported that were considered to significantly

impair on the trial.

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Table 2

Demographic and Clinical Data

Demographic

Completers

(n= 22)

Drop Outs

(n= 10)

p value

Unit (%)

Inpatient

Rehabilitation

Day Hospital

50.0

36.4

13.6

90.0

0

10.0

.07a

Age, years: mean (S.D.)

27.8 (10.1) 38.1 (15.0) .12b

Gender: % F

95.4 100 .49 a

Ethnicity (% WB)

41.0 80.0 .04 a

Employment status (%)

Unemployed

Student

Non-professional/voluntary

Professional

Retired

9.1

50

18.2

18.2

4.5

70.0

10.0

20.0

0

0

.01 a

Diagnosis (%)

AN-R

AN-BP

EDNOS

59.0

27.3

13.6

70.0

20.0

10.0

.84 a

BMI on admission: mean (S.D.)

15.3 (2.6) 13.7 (1.2) .08c

Duration of illness, years: mean (S.D.)

10.6 (10.8) 22.1 (14.0) .04b

Length of current stay in hospitald, days:

mean (S.D.)

29.7 (52.1) 83.8 (147.5) .15 b

PHQ: mean (S.D.)

18.3 (7.6) 16.6 (7.7) .57c

GAD: mean (S.D.)

13.4 (5.0) 13.6 (5.2) .96 c

EDE-Q: mean (S.D.)

Restraint

Eating Concern

Shape Concern

Weight Concern

Global

4.1 (1.8)

3.8 (1.5)

4.6 (1.4)

4.0 (1.6)

4.0 (1.3)

3.0 (2.7)

2.9 (1.7)

3.8 (1.0)

3.5 (1.4)

3.3 (1.4)

.22 c

.14 c

.17 c

.33 c

.16 c

Note. F= female; WB= White British; AN-R= Anorexia Nervosa, Restrictive subtype; AN-BP=

Anorexia Nervosa, Binge Purge subtype; EDNOS= Eating Disorders Not Otherwise Specified; BMI=

Body Mass Index. a Categorical data was compared using Chi-squared statistical test.

b Data meeting the assumptions for

parametric tests was compared using independent samples t-test. c

Data not meeting the assumptions

for parametric tests was compared using Mann-Whitney U test. d

Length of current stay calculated

from admission into hospital until commencing the study.

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Sitting Quietly

Following the sitting quietly task, participants were asked via the online

programme whether they were able to remain sitting quietly for the duration of the

task. Participants reported that they were unable to remain sitting quietly for 20

(31%) of these sessions. For six sessions, participants did not comment on what

alternate activity they were engaging in and for three sessions they described being

interrupted by staff. For the remaining sessions, participants reported; reading or

listening to the radio (N=4); using their mobile (N=2); going for a walk or stretching

(N=2); knitting (N=1); talking to others in the room (N=1); packing things away

(N=1). As there was no measure of how long they engaged in these alternate

activities and because of the high proportion of sessions being contaminated, these

sessions were kept within the analyses.

Task performance

Performance data was obtained for the Quiz and Braille tasks. The means and

standard deviations for all three sessions of participant performance on the Quiz and

Braille tasks are shown in Table 3. One participant failed to return all the Braille

response sheets and two participants failed to return the Braille sheet for session

three, which led to some missing data.

The data suggests that participants were generally compliant with these tasks.

For Quiz performance there was no main effect of session number on mean number

of questions completed: F(2,42) = 1.18, p = .32, mean response time per question:

F(1.49, 31.20) = 1.74, p = .20 or mean percentage of questions correct: F(2, 42) =

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1.59, p = .22. However, there was a main effect of session number on mean number

of letters translated for Braille performance: F(2,36) = 7.61, p = .002. Pairwise

comparisons, computed with a Bonferonni adjustment, revealed that there was a

difference between session 1 and 3 only (p = .01). There was no main effect of

session number on percentage of correct responses: F(1.40, 25.15) = .35, p = .63.

These findings suggest that as sessions progressed, participants improved in

the number of Braille letters they translated, possibly representing a practice effect.

However, no other variations in performance over sessions were found.

Mealtimes

The number of trials completed at each meal time by task are summarised in

Table 4. The trials completed at each meal time did not differ according to task:

(6, N = 257) = 11.89, p = .06

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Table 3.

Performance Results for Braille and Quiz

Session 1 Session 2 Session 3

Quiz

Questions completed,

n: mean (S.D.)

117.5 (22.6) 125.1 (24.2) 119.6 (29.9)

Response time per question,

seconds: mean (S.D.)

5.8 (2.1) 5.3 (1.5) 6.0 (1.8)

Questions correct, %:

mean (S.D.)

71.9 (8.6) 71.3 (9.9) 69.2 (9.0)

Braille

Letters translated, n:

mean (S.D.)

58.7 (38.2) 66.2 (42.0) 78.0 (44.1)

Correct responses, %:

mean (S.D.)

92.0 (13.5) 88.5 (17.9) 88.6 (18.2)

Table 4

Number of Trials Completed at each Meal Time

Tetris Quiz Braille Sitting Quietly

Breakfast

10

11

21

18

Lunch 27 30 25 30

Dinner 29 23 19 14

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Outcomes

Mean baseline scores for PANAS negative and positive affect subscales did

not differ between tasks: F(2.22, 46.63) = .66, p = .54 and F(3, 63) = .67, p = .58

respectively. Baseline and change over time of PANAS positive and negative scores

along with post-task questionnaire subscales, averaged across the three sessions, are

reported in Table 5. The baseline PANAS subscales are out of a total of 50 each.

Positive change scores on the PANAS negative affect subscale represent an increase

in negative affect over time, whilst positive change scores on the PANAS positive

affect subscale represent an increase in positive affect over time. All other measures

are rated from 0 (very slightly/ not at all) to 5 (extremely).

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Table 5

Outcome Measures Averaged Across Sessions

Measure

Tetris

Quiz

Braille

Sitting Quietly

Baseline PANAS negative:

mean (S.D.)

24.18 (10.75) 24.94 (11.54) 24.35 (11.11) 25.19 (11.28)

Baseline PANAS positive:

mean (S.D.)

16.24 (5.52) 16.73 (5.28) 16.32 (5.20) 15.95 (5.25)

PANAS negative change:

mean (S.D.)

-2.19 (3.60) -3.32 (2.72) -4.09 (4.71) .52 (2.95)

PANAS positive change:

mean (S.D.)

2.53 (3.45) 1.08 (3.77) 2.38 (4.26) -1.28 (3.24)

Intrusive thoughts:

mean (S.D.)

2.23 (.94) 2.27 (1.14) 2.05 (.94) 3.39 (1.23)

Intrusive images: mean (S.D.) 1.73 (.79) 2.08 (1.09) 1.72 (.82) 2.98 (1.20)

Difficulty coping: mean

(S.D.)

1.96 (.72) 2.24 (.90) 2.11 (.98) 3.43 (1.11)

Helpfulness: mean (S.D.) 2.84 (.86) 2.59 (.99) 2.75 (.99) 1.23 (.36)

Enjoyment: mean (S.D.) 2.85 (.97) 2.67 (1.09) 3.15 (1.16) 1.38 (.82)

Difficulty: mean (S.D.) 2.43 (.95) 2.08 (.73) 2.64 (.98) 3.24 (1.17)

Focus: mean (S.D.) 3.35 (.63) 3.02 (.95) 3.34 (.78) 2.21 (.92)

PANAS Negative

There was a main effect of task on change in PANAS negative subscale

scores: F(3, 48) = 7.49, p < .001 (see Figure 2). Pairwise comparisons revealed that

there was a difference between Sitting Quietly and: Tetris (p = .027), Quiz (p = .01)

and Braille (p = .003). There was also a trend towards a difference between Tetris

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and Quiz (p = .06), with the Quiz leading to greater improvements in negative affect.

Tetris, Quiz and Braille led to a reduction in negative affect, whilst Sitting Quietly

led to an increase in negative affect. No other differences were observed between

Tetris, Quiz and Braille.

There was no main effect of session number on change in PANAS negative

subscale scores: F(2, 32) = 1.92, p = .16 and subsequently no interaction between

task and session number: F(6, 96) = 17.41, p = .39.

This would suggest that doing an activity in the post-meal period helps to

reduce negative affect, compared to no activity. Furthermore, this effect was not

different between the three sessions or the three types of activities.

Figure 2. Change in PANAS negative scores across the four tasks. Error bars

indicate standard error of the mean.

-6

-5

-4

-3

-2

-1

0

1

2

Tetris Quiz Braille Sitting Quietly

Ch

an

ge

in P

AN

AS

neg

ati

ve

Activity

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PANAS Positive

There was also a main effect of task on change in PANAS positive subscale

scores: F(3, 48) = 3.85, p = .02. Pairwise comparisons revealed that there was a

difference between Sitting Quietly and: Tetris (p = .002) and Braille (p = .02). There

was also a trend towards significance between Sitting Quietly and Quiz (p = .08). No

other differences were observed between Tetris, Quiz and Braille.

There was no main effect of session number on change in PANAS positive


task and session number: F(3.65, 58.33) = .744, p = .55.

This would suggest that doing an activity in the post-meal period helps to

improve positive affect, compared to no activity.

Intrusive Thoughts

There was a main effect of task on ratings of body and fatness related

intrusive thoughts2 during the post-meal period: F(1.95, 31.22) = 17.53, p < .001.

Pairwise comparisons revealed that there was a difference between Sitting Quietly

and: Tetris (p < .001), Quiz (p = .001) and Braille (p < .001). Tetris, Quiz and Braille

led to an increase in positive affect whilst sitting quietly led to a decrease in positive

affect. There were no other differences between Tetris, Quiz and Braille.

2 Participants answered the following question related to intrusive thoughts (and images): ‘To what

extent did you experience intrusive body and fatness related thoughts (images) during the activity?’

This was to ensure participants experience of quantity, intensity and duration were all captured within

these questions.

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There was no main effect of session number on change in scores for intrusive

thoughts: F(2, 32) = 1.50, p = .24 and subsequently no interaction between task and

session number: F(6, 96) = 1.023, p = .42.

This would suggest that doing an activity in the post-meal period helps the

experience of body and fatness related intrusive thoughts, compared to no activity.

Intrusive Images

There was a main effect of task on ratings of body and fatness related

intrusive images (see Footnote 3) during the post-meal period: F(1.71, 27.35) =

21.90, p < .001. Pairwise comparisons revealed that there was a difference between

Sitting Quietly and: Tetris (p < .001), Quiz (p = .002) and Braille (p < .001). In

addition, there was also a difference between Quiz and Braille (p = .01), and Quiz

and Tetris (p = .002). The Braille and Tetris tasks led to an improved experience of

intrusive images than the Quiz task. No other differences were observed between

Braille and Tetris.

There was no main effect of session number on scores for intrusive images:

F(2, 32) = 2.38, p = .11, however there was an interaction between task and session

number: F(6, 96) = 2.59, p = .02.

This would suggest that doing an activity in the post-meal period helps the

experience of body and fatness related intrusive images, compared to no activity.

This effect also varies across sessions. In addition, both the Braille and Tetris tasks

appeared to be better at improving the experience of intrusive images than the Quiz.

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Difficulty Coping

There was a main effect of task on ratings of ‘difficulty coping’ during the

post-meal period: F(3, 48) = 8.66, p < .001. Pairwise comparisons revealed that there

was a difference between Sitting Quietly and: Tetris (p = .011), Quiz (p < .001 and

Braille (p < .001). No other differences were observed between Tetris, Quiz and

Braille.

There was no main effect of session number on ratings of difficulty in coping


task and session number: F(6, 96) = .75, p = .31.

This would suggest that doing an activity in the post-meal period reduces

perceived difficulty coping during the post-meal period, compared to no activity.

Helpfulness

There was a main effect of task on ratings of ‘helpfulness’ of the task during

the post-meal period: F(3, 48) = 10.82, p < .001. Pairwise comparisons revealed that

there was a difference between Sitting Quietly and: Tetris (p < .001), Quiz (p < .001)

and Braille (p < .001). No differences were observed between Tetris, Quiz and

Braille.

There was no main effect of session number on ratings of difficulty in coping


task and session number: F(6, 96) = 1.34, p = .25.

This would suggest that doing an activity in the post-meal period is perceived

to be more helpful than engaging in no activity.

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Correlations

Scores on change in PANAS negative subscale were averaged across the

three trials for each task. They were then correlated with ‘difficulty in coping’ and

‘helpfulness of task’ questions of the post task questionnaire to help determine if the

measures were assessing similar constructs. The Pearson’s correlation coefficients

and p-values for these correlations are reported in Table 6. There is a negative

correlation between PANAS negative and ‘helpfulness of task’ for the Tetris task, in

other words the more helpful people found Tetris the greater reduction in PANAS

negative. However, no other correlations were observed, suggesting that these

measures are assessing different constructs.

Table 6

Correlations between PANAS negative and post task questionnaire across tasks.

Measure Tetris Quiz Braille Sitting

Difficulty Coping r = -.21

p = .35

r = -.23

p = .306

r = -.38

p = .08

r = .009

p = .97

Helpfulness r = -.56

p = .007

r = - .31

p = .16

r = -.38

p = .08

r = .01

p = .97

Enjoyment r = -.04

p = .85

r = -3.2

p = .15

r = -.30

p = .18

r = -.05

p = .84

Difficulty r = -.21

p = .35

r = -.13

p = .56

r = -.10

p = .65

r = .09

p = .69

Focus r = .02

p = .93

r = .004

p = .99

r = -.04

p = .85

r = .18

p = .43

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Enjoyment, Difficulty and Focus

How much participants enjoyed the task, how difficult they found it and how

much they were able to focus on the task were considered possible moderators of

changes in negative affect. Therefore, the responses to these questions, as part of the

post task questionnaire, were correlated with changes in PANAS negative (Table 6).

No correlations were observed, and therefore these variables were not included

within moderator analysis.

However, there was a main effect of task on ratings of enjoyment of the task

during the post-meal period: F(3, 48) = 6.07, p = .001. Pairwise comparisons

revealed that there were differences between Sitting Quietly and: Tetris (p = .002),

Quiz (p = .001 and Braille (p = .003). No differences were observed between Tetris,

Quiz and Braille.

There was no main effect of session number on ratings of enjoyment: F(2,

32) = 3.21, p = .054 and subsequently no interaction between task and session

number: F(6, 96) = .828, p = .30.

This would suggest that doing an activity in the post-meal period is perceived

as more enjoyable than engaging in no activity.

There was also a main effect of task on ratings of difficulty of the task during

the post-meal period: F(3, 48) = 4.88, p = .005. Pairwise comparisons revealed that

there were differences between: Sitting Quietly and Quiz (p = .003); and Braille and

Quiz (p = .021). No other differences were observed between Sitting Quietly, Tetris,

Quiz and Braille.

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There was no main effect of session number on ratings of difficulty: F(2, 32)

= 1.86, p = .17 and subsequently no interaction between task and session number:

F(3.56, 56.96) = 1.55, p = .17.

This would suggest that the Quiz was perceived as easier than Sitting Quietly

and Braille.

There was also a main effect of task on ratings of ability to focus on the task

during the post-meal period: F(3, 48) = 6.28, p = .001. Pairwise comparisons

revealed that were differences between Sitting Quietly and: Braille (p < .001), Quiz

(p = .02) and Tetris (p = .001). No other differences were observed between Tetris,

Quiz and Braille.

There was also a main effect of session number on ratings of ability to focus:

F(2, 32) = 3.44, p = .044. However, there was no interaction between task and

session number: F(6, 96) = .12, p = .99.

This would suggest that Sitting Quietly was perceived as more difficult to

focus on than any of the other tasks, but that ability to focus reduced over sessions.

Discussion

The findings of this study show that engaging in an activity after meals helps

to improve the post-meal experience for hospitalised patients with eating disorders.

More specifically, a visuospatial, a verbal and a somatic task led to the following:

reduced negative affect, increased positive affect (although only a trend in increased

positive affect for the verbal task), improved experience of intrusive body and fatness

related thoughts and imagery and improved perceived ability to cope. The tasks were

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also considered more helpful than a control condition requiring no activity. These

findings add to the scarce literature providing evidence of the benefit of post-meal

activities for eating disorders, and are of practical use to patients and supporting

services that incorporate mealtimes, in particular hospitals.

Theory suggests that feeling fat is a result of misinterpreting emotions and

bodily sensations giving rise to intrusive thoughts and imagery (Fairburn, 2008;

Murphy et al., 2010). One of the main ways the Tetris, Quiz and Braille may be

improving the post-meal experience is by reducing feelings of fatness, through

reducing the associated cognitions and emotions. The fact that Tetris, Quiz and

Braille did not differ on all but one of the variables may suggest a number of

possibilities relating to their involvement in the prevention of feeling fat. Firstly, it is

plausible that Tetris, Quiz and Braille themselves acted simply as attentional

distractions, creating demand on the central executive component of working

memory (Baddeley & Hitch, 1974), limiting capacity to process information, as has

been reported within the PTSD literature (Pearson & Sawyer, 2011). This could

mean that neither visuospatial, verbal or somatic experiences are involved in the

development of negative affect (feeling fat) or that one or more are involved but their

relative contributions outweighed by the strength of the effect of general distraction

on overall post meal cognitive processing. Alternatively, it is possible that feeling fat

develops due to a combination of visuospatial, verbal and somatic experiences and

these tasks created similar modality-specific interference. Comparing a task requiring

a modality not hypothesised to be involved in the development of feeling fat, such as

a task requiring auditory processing, but creating a similar level of attentional

distraction, might help to differentiate these possibilities.

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The findings suggest some evidence for task specific modality interference,

as ratings of intrusive body and fatness related images differed between tasks. A

visuospatial and somatic task led to improved experiences of intrusive imagery when

compared with a verbal task. Despite being designed as a somatic task, translating

Braille still requires a degree of visuospatial processing. Therefore, this would

suggest that the development of intrusive images following meals can be inhibited by

a visuospatial task, in line with the working memory model of limited capacity for

visuospatial processing (Baddeley & Andrade, 2000). This finding also reflects

evidence that visuospatial tasks, carried out by dieting and non-dieting women, help

to reduce the vividness of food related images, which the authors report may help to

treat people who have difficulties with food cravings (Kemps, Tiggemann, Woods, &

Soekov, 2004).

One might expect that if visuospatial tasks helped with the experience of

intrusive imagery there might also be an associated greater reduction in negative

affect when compared to the Quiz, but the findings suggest no such effect. It is

unlikely that this finding reflects a lack of relationship between body and fatness

related images and distress for people with eating disorders, particularly as Sitting

Quietly was not beneficial to the experience of intrusive imagery and was associated

with an increase in negative affect. In addition, people with bulimia nervosa have

been shown to experience significantly more negative and anxiety-provoking

spontaneous imagery than controls (Somerville, Cooper, & Hackmann, 2007) and for

psychological disorders in general, intrusive imagery is associated with strong

emotions and often represents the individual’s personal fears (Ottaviani & Beck,

1987; Wells & Hackmann, 1993). Alternatively, a lack of finding that the

111

visuospatial tasks led to a greater reduction in negative affect compared with the

verbal task may simply be a result of insufficient power.

Ratings of how much participants enjoyed the tasks, how difficult they found

them and how much they were able to focus on them were gathered to determine

whether these factors might moderate changes in negative affect. However, none of

these factors were found to correlate with negative affect and, therefore, could not be

considered possible moderators. The lack of correlation between perceived difficulty

of task and changes in negative affect is an interesting finding and corroborated by

participants varied accounts of what factors within the tasks they found helpful.

Some reported that tasks they found more difficult led to frustration and feeling like

a failure and were considered unhelpful, whilst others described greater difficulty

helping them to be more engaged, challenged and distracted, thus helping to improve

the post-meal experience. However, participants described finding tasks they enjoyed

and were engaged with as most helpful, which is contrary to the findings from the

correlation analyses.

Limitations

When reviewing the results of this study it is worth considering a number of

possible limitations. Unfortunately the study failed to meet the number of

participants necessary to have power to detect significant effects. Therefore, it is

possible that potentially significant findings, such as differences in the impact of the

different tasks, went undetected. In addition, although the sample that completed the

study on the whole did not differ from those who dropped out of the study, data from

those who refused to participate was not collected. Therefore, it is possible that the

112

sample is not entirely representative of all hospitalised people with eating disorders.

However, this is likely to be less of a problem considering the high uptake of the

research (67% agreed to take part).

Participants were required to independently complete the study, with little

input from the researcher. This meant it was difficult to control for the length of time

participants began each trial post-meal. Participants were instructed to begin the

study immediately after their meal, but in some of the written comments, participants

reported that they were unable to do the study immediately, and there was no option

to record how long after the meal they began the study. Although attempts were

made to minimise this limitation by removing trials that appeared to be outside of the

mealtimes, this was a fairly large window of time to allow for variation in when the

units might have the meals. A solution to this problem in future studies might be to

ask participants to report the time they had completed their meal, and comparing this

to the time the task started, which is recorded by the online programme. In addition,

it was difficult to control how much people were adhering to the tasks and not

completing other activities within the 15 minute time frame. However, the data on

adherence to the Quiz and Braille tasks would suggest people were completing the

tasks to the best of their abilities. However, there were variations in how people

completed the control condition, with reports of completing other activities during

this task. It is likely that participants were attempting to distract themselves from the

difficult post-meal experience, as reflected in the increase in PANAS negative scores

and decrease in PANAS positive scores following the task. Therefore, the control

condition may reflect a more ecologically valid scenario, where patients engage in

behaviours that help to occupy them when no activities are planned, particularly as

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these types of activities are routinely observed within the units during the post-meal

period.

Another limitation of the study was that there were key differences between

the three units used to obtain participants. The inpatient ward, rehabilitation unit and

day hospital all differed not only in terms of severity of illness but also how much

participants were supervised following meals, levels of distraction and whether they

could be on their own or not to complete the study. In addition, 90% of the drop outs

were from the inpatient unit. Due to the sample size, the study would be

underpowered to make comparisons between these three units. However, this

limitation can also be seen as a strength in terms of generalisation.

Considerations for Future Research

As previously alluded to, future research could compare tasks that interfere

with different modalities that are not hypothesised to play a role in feeling fat to

those that do. An example could be an auditory task, not requiring a verbal

component that would be as distracting as other tasks. Since participants reported

task related factors that helped to improve the post-meal experience, these factors

could be manipulated, taking into consideration that what one individual finds as

engaging or difficult might differ from another.

Although the post-meal experience for hospitalised patients with eating

disorders is made more challenging due to patients being frequently supervised and

restricted in activities, it is likely that the experience is difficult for non-hospitalised

patients as well. Future research may want to consider outpatients, who may be able

to shed light on their experiences of the post-meal period and how they manage this

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time, but also developing evidence for tasks that might be helpful for this population.

This would also help hospitalised patients, when thinking about their transition back

to the community.

Hospital treatment for eating disorders rarely caters for people with bulimia

nervosa and no one with this diagnosis was within the three units at the time of

recruitment. Therefore, any future community research would want to consider this

population who might experience the post-meal period differently. In addition, it

would be useful to compare restricting and binge subtypes of anorexia nervosa,

particularly as they are likely to have different experiences of the post-meal period.

Clinical Implications

This research would suggest that doing structured activities helps to improve

the experience of the post-meal period. Improving patients’ ability to manage this

time has the potential of improving their engagement to hospital treatment and

improving clinical outcomes. In practice, it might be worth exploring individually

with patients the activities that they find enjoyable, challenging and which they feel

motivated to engage in, as it is likely that the choice of activity is also down to the

preference of the individual. In addition, although there was no main effect of session

number on both the positive and negative indicators it is possible that with repeated

engagement in the same activity, patients may habituate to the activities, lessening

their effects. Patients should therefore consider a variety of activities that they can

alternate over time. Clinical experience would suggest that the majority of patients

have access to a mobile phone, tablet computer or personal laptop during their stay in

hospital. Games and applications that already exist and can be downloaded on to

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these devices may provide a cheap and straightforward gateway into providing

access to cognitively demanding activities. In addition, online ‘crowd sourcing’

projects (where the general public are invited to voluntarily take part in tasks

proposed by individuals and organizations online) might be a useful way for patients

to distract themselves, whilst also doing something fulfilling leading to a sense of

achievement. The specific types of activities most suited to people with eating

disorders would benefit from further exploration, but the consistent finding within

this research suggests that doing something structured and engaging is likely to be

helpful.

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Part 3: Critical Appraisal

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Introduction

This critical appraisal will firstly focus on the rationale for researching an

inpatient eating disorders population and reviewing the literature on carer

interventions. Secondly, decision-making for particular areas of the methodological

design of the empirical paper will be considered. Thirdly, some of the dilemmas that

I came across whilst conducting this research will be reviewed, how they were

managed and possible steps for future research. Finally, I will conclude with some

personal reflections developed over the course of the research process.

Rationale for Eating Disorders Research

When I first began embarking on the difficult decision of choosing a research

area, I reflected on past experiences that have absorbed my interests. Several years

ago I worked as a nursing assistant on a mental health ward, where there was no

input from psychological services. Many of the patients were frequently described by

staff as difficult, challenging and felt that there was little hope for their future. Some

patients had remained on the ward for considerable lengths of time, whilst others had

repeat admissions. It was at this point that I became aware that I was emotionally

drawn to working with complex clients. I felt a deep sense of empathy towards their

vulnerability and a strong desire to help them using a more psychological approach.

Subsequently, when I had the opportunity of working on placement within a mental

health inpatient setting I saw the potential for psychology to make a difference.

Eating disorders have an estimated 9.6 mortality ratio, the highest of all

psychiatric illnesses (Nielsen et al., 1998), and suicide rates are worryingly high

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(Franko & Keel, 2006). In addition, it is common for patients to be diagnosed with

co-morbid psychiatric and physical health difficulties (Fairburn, 2008). I was not

only drawn to research in the area of eating disorders because of the level of

complexity and vulnerability, but also because I personally experienced the impact of

an eating disorder when a close friend developed the illness. It was this experience

that highlighted to me the power of an eating disorder and the struggle that ensues.

Through my clinical experiences I have become increasingly aware of patient

dissatisfaction towards inpatient treatment. In fact, only half of people with eating

disorders find inpatient treatment useful (Newton, Robinson & Hartley, 1993).

Considering the government’s view of a more patient-centred healthcare

(Department of Health, 2001), it is important that the experiences of patients are

considered, particularly when it is associated with improving clinical outcomes

(Clinton, Björck, Sohlberg, & Norring, 2004; de la Rie, Noordenbos, Donker & van

Furth, 2008). A qualitative study of inpatient mealtimes highlighted a variety of

factors which patients report influence how they perceive the mealtime (Long,

Wallis, Leung, & Meyer, 2012). This led to a number of recommendations of how to

improve mealtimes based on patients’ views. Therefore, I felt that this study would

not only be useful in developing the theory of ‘feeling fat’ but would also be

clinically relevant.

The move towards community rather than inpatient care provision for people

with mental health problems has brought about an increased awareness of the

importance of carer involvement (Worthington, Rooney, & Hannan, 2013). In

contrast to caring for someone with a physical health problem, carers of people with

mental health problems face additional challenges; the unpredictable nature of

mental health problems, stigma (which could result in the carer feeling isolated as

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they try to cope on their own), lack of information due to concerns about

confidentiality, for some the fear of losing their loved one to suicide, and a lack of

specialised respite support (Royal College of Psychiatrists, 2005). Greater awareness

of the need for carer involvement has led to guidelines that recommend improving

carer involvement, including carer assessments and interventions. For carers of

people with eating disorders the National Institute of Clinical Excellence guidelines

recommend that carers are offered information and education to support their

involvement in the care of their loved one and that family interventions are the

treatment of choice for adolescents with eating disorders (NICE, 2004). Since I had

experience of running a carers’ group intervention within a psychosis service and

noted the benefits of group members sharing their experience with each other, I

became curious of what similar interventions were available for carers of people with

eating disorders. This led me to reviewing the literature on this area, with the aim of

supporting their inclusion within guidelines for eating disorders.

Rationale for Methodological Choices within the Empirical Paper

As the study design was based on a design used within the post traumatic

stress disorder literature (Holmes, James, Kilford, & Deeprose, 2010), I was

fortunate not to have to develop suitable visuospatial and verbal tasks. However, I

included an additional somatic task within the design, which aimed to tap into body

and fatness related physical sensations. When considering possible options, I tried to

keep in mind the need to find a task that would be relatively straightforward for

participants to understand, could be set up easily and be completed independently

and had a game-like quality about it to ensure similarity with the other tasks. I

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considered some of the motion control games that already exist on computers that

involve using the body. However, these games would require a level of exercise that

would be prohibited within an eating disorders unit. Another possibility was to

consider the psychophysics field, which uses sensory perception tasks. Two possible

tasks emerged following a brief review of the literature. One would involve

distinguishing different temperatures or distances from various pointers touched on

their skin. Although this task would be non-visual, it would have been difficult to set

up, particularly as I was expecting participants to complete the study independently.

The second option would involve participants differentiating different gradients of

abrasive paper. I quickly disregarded this possibility when considering that

participants would need to engage in the task for 15 minutes, as it would have been

difficult to find enough variations in paper gradients to fill the time. Muscle

relaxation was another alternative task considered, which would have been relatively

easy to implement, but was felt to be too different from the other tasks that were

likely to have been more difficult, more game-like and more active. Finally, I

decided on developing a task involving the translation of Braille. The benefits of

using this task was that it was cheap to develop, task instructions were

straightforward, the task could be administered independently and it could be

relatively easily adapted in relation to its level of difficulty and length of time. In

addition, Braille tasks have been shown to involve the somatosensory systems of

blind and sighted people (Sadato, 1998). Translating random letters, rather than

words or sentences, was chosen to limit the verbal processing involved in the task.

However, I was aware that there would still be a level of visuospatial processing

(Sadato, 1998), and this was reflected in the empirical papers findings that the Braille

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and Tetris tasks helped improve the experience of intrusive imagery when compared

to the Quiz and control conditions.

Early on in the design of the study I decided to develop an online programme

administered via a laptop to deliver the questionnaires and some of the task

materials. The benefit of this approach was that it allowed more control over the

data, which could be safely secured on a password-protected database, thus

eliminating human error when transferring data to databases. In addition, all data

were immediately uploaded to a central database when they were collected, rather

than being stored locally on each participant’s laptop. Participants were also forced

to answer all of the questions before being able to move on, reducing the potential

for incomplete data. In addition, this approach allowed participants to work on the

study independently and removed any bias of an observer being present, known as

the observers paradox. However, without the presence of a researcher during the

trials it was difficult to control various factors that might also have influenced the

results, such as length of time before commencing the study and engaging with other

activities during the tasks. Future research should consider the use of smart phone

technology as over half of the adult population now use a smart phone (Ofcom,

2013).

The post-meal period is known to be anxiety-provoking (Shapiro et al.,

2008), but clinical experience suggests that other difficult emotions are elicited

during this time. Therefore, the aim was to determine whether the tasks impacted on

the whole experience of emotions and the Positive and Negative Affect Scale

(PANAS) was felt to fit this purpose (Watson, Clark & Tellegen, 1988).

Positive and negative affect have been consistently shown as factors which

describe how someone is feeling and incorporates a range of emotions (Watson &

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Tellegen, 1985). Positive and negative affect are not considered opposites, but two

distinctive dimensions. High positive affect represents enthusiasm and activity,

whilst low positive affect represents lethargy and sadness. High negative affect

represents distress and displeasure whilst low negative affect represents calmness

and sensitivity. The PANAS, a measure of these two dimensions, was developed to

be brief and easy to administer and has been found to have high internal consistency

(Watson et al., 1988). In addition, the PANAS is sensitive to momentary mood

fluctuations. Correlations between the Eating Disorders Examination (an interview of

eating disorder pathology) and a self-report version, suggest that patients with eating

disorders are able to accurately self-report their symptoms (Carter, Aime, & Mills,

2001; Wolk, Loeb, & Walsh, 2005).

Dilemmas

Recruiting people with eating disorders is notoriously challenging

particularly as many are reluctant to seek or accept treatment (Agras et al., 2004).

This may be due to the highly valued nature of eating disorders (Serpell, Treasure,

Teasdale, & Sullivan, 1999). Approximately only one new patient is admitted to the

inpatient ward a week (Lawrence, Kyrtatos, Friddin, & Johnson-Sabine, 2011), so I

was keen to go beyond the inpatient ward for recruitment. Initially I avoided

recruiting from the day hospital and rehabilitation unit, where there are different

procedures for carrying out mealtimes and post-meal supervision. However, when

recruitment was slow I decided to recruit from these units. With more time and

resources it would have been useful to gain ethical permission to recruit from units in

other trusts. To try to boost uptake of the research, those who had declined the

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research previously were asked at a later stage whether they had reconsidered. This

led to one participant changing her mind, albeit I was conscious that when I was

inviting participants to take part that I was coercion-free (Fulford & Howse, 1993;

Hategan, Parthasarathi, Bourgeois, 2014). I was also mindful of the covert pressures

arising from the unequal power relationship (Lidz et al, 1984). I noticed that when

visiting the unit, I dressed more informally than my typical attire for work, possibly

to try and reduce this power differential.

The drop-out rate for the study was 31%, which falls within a previously

reported drop-out range of 13-66% for studies of participants with eating disorders

(Agras et al., 2004). Once starting the study, the drop-out rate was even lower at just

8%. Perhaps this reflects a perfectionist trait, commonly described as a central

feature of eating disorders (Bruch, 1973), helping motivate them to complete the

study trials.

Financial incentives have been shown to be an important motivator for

healthy volunteers to participate in research (Tishler & Bartholomae, 2002).

Therefore, this was considered a possible way to improve the uptake of the study, but

unfortunately I had no surplus funds to do so. I felt uncomfortable asking patients to

complete the study, requiring a considerable amount of time and effort and with what

felt like no return for them. However, after obtaining participants informal feedback

after the study, I observed many found doing the study enjoyable and helpful, either

because the tasks themselves improved their post-meal experience, because it

inspired them to try new things or because they simply learnt the sorts of things that

help them during this difficult time.

When developing the post-task questionnaire, a question I failed to include

was rating participants’ somatic experience post-meal. Thus, I was unable to

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determine whether tasks could interrupt this experience differently. In addition, it

might have been helpful to separate intrusive imagery into differential sensory

modalities. Evidence suggests that modality specific tasks reduced vividness of

distressing auditory and visual images (Kemps & Tiggemann, 2007). This would

suggest that the visuospatial task would only interfere with intrusive visuospatial

imagery as opposed to other sensory specific imagery.

Personal Reflections

Over the course of this research I became struck by participants’ personal

accounts of how they experienced the post-meal period and which tasks they found

helpful. It reminded me of the importance of an individualised and collaborative

treatment approach, as everyone reported different preferences, abilities and coping

strategies. In addition, giving patients with eating disorders choice has been shown to

improve engagement (Vandereycken & Vansteenkiste, 2009). Considering what

resources participants already had, I now wonder whether I missed an opportunity to

involve service users in the development of this research. For example, a focus group

may have helped determine the design of the research or piloting the tasks on

patients might have given a more accurate reflection of how difficult and enjoyable

they found the tasks. The secondary benefit of this approach might have been a

greater uptake of the research.

I often felt like an intruder, when sporadically visiting the units to recruit

participants and to follow up with people already taking part. Before commencing

the study I had introduced myself at a staff meeting and hoped to meet with patients

individually when inviting them to the research. However, not all of the staff

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attended the meeting and I did not get an opportunity to meet with some of the

patients, as they had often been invited to take part by the assistant psychologist. On

reflection, I think that I would have felt more comfortable and would have engaged

more of the staff and patients if I had been able to introduce myself to everyone

individually. In addition, it might have been beneficial to have a photograph of

myself on the research posters, something which could have been distributed

amongst the team.

In addition, it was often very difficult to find times to meet with participants

during their busy structured days. I was mindful that to be able to provide informed

consent participants would need enough knowledge to make a decision but that their

illness might impair their understanding (Fulford & Howse, 1993; Hategan et al.,

2014). When I did manage to meet with participants, I often had limited time and I

think it might have been more useful to meet participants in the evenings or

weekends, when they would have more time and have felt less rushed.

Distraction is a common method in which to manage difficult experiences,

and I have seen how distraction tasks can be beneficial as well as detrimental to

people. Consequently, when I considered researching distraction tasks I felt pulled in

two directions. On the one hand, I was aware that paying attention to difficult

thoughts and feelings, and fusing with these can often leave people feeling worse. In

this sense, distraction can be helpful by transferring attention to something less

threatening (Hawton, Salkovskis, Kirk & Clark, 1989). On the other hand, distraction

is also a form of avoidance that, in the long term, prevents people from being able to

challenge negative thoughts and feelings, and can exacerbate problems. Therefore, I

was also concerned that investigating distraction techniques could serve to prevent

people with eating disorders from being able to confront their difficulties.

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After listening to participants’ accounts of how they experience the post-meal

period I became aware of just how difficult the experience is. I observed that they

commonly used their own distraction techniques, including reading and puzzles, and

I realised it would be very difficult for patients to manage this event without

applying some distraction. Sitting quietly was also reported as being difficult and

almost impossible to carry out at this time. Therefore, in the short-term, distraction

techniques are likely to be useful strategies in a hospital context, where the post-meal

experience is known to be anxiety provoking (Shapiro et al., 2008). When returning

to the community, distraction techniques may also help reduce compensatory

behaviours, although this brings me back to the detriment of not confronting the

problem. Perhaps over time patients can learn to find other strategies to manage these

experiences, such as mindfulness and defusion techniques.

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Appendix A

Outcome Measures used within the Literature Review

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Client Outcome Measures

Eating Disorder Inventory 2 (EDI-2). The EDI-2 is completed by the client

as a measure of attitudes and behaviours towards eating and personality traits

associated with eating disorders (Garner, 1991).

Anorectic Behaviour Observation Scale (ABOS). The ABOS is a 30-item

measure of eating behaviour completed by the carer, with yes, no or don’t

know responses. There are three subscales: 1. Concern with weight and food,

and denial of the problem; 2. Bulimic-like behaviour; and 3. Hyperactivity

(Vandereycken & Meermann, 1984).

The Medical Outcome Study Short Form Scale (SF-36). The SF-36

consists of 36 items measuring the effect of health problems on factors

including: physical, social, usual role, pain, distress and wellbeing, vitality

and health perceptions (Ware & Sherbourne, 1992).

Eating Disorder Evaluation Scale (EDES). The EDES is an objective

evaluation of the severity of the eating disorder based on 15 items

(Vanderlinden, Norre, & Vandereycken, 1995).

Global Assessment of Function (GAF). The GAF is a global assessment of

how an individual is functioning based on a score from 0-100. It corresponds

to axis V of the DSM-IV-TR (American Psychiatric Association, 2000).

Global Eating Disorder Functioning (GEDF). The GEDF has been adapted

from the GAF to enable carers to rate their loved ones functioning on a scale

of ten intervals from 1-100 (Goddard et al., 2011).

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Children’s Global Assessment (CGAS). The CGAS is a global measure of

child psychiatric illness and functioning using 10 Likert scales from 1-100,

where 100 is the healthiest (Shaffer et al., 1983).

Carer Measures

Hospital Anxiety and Depression Scale (HADS). The HADS measures the

presence of anxiety and depression over the previous week and consists of 14

items (Zigmond & Snaith, 1983).

General Health Questionnaire (GHQ). The GHQ is a measure of general

wellbeing over the last few weeks. There is a 12 item version (GHQ-12)

(Goldberg, 1992) or a 28 item version (GHQ-28) (Goldberg & Williams,

1988).

Depression Anxiety and Stress Scale (DASS). The DASS is a self-report 42

item measure of tension/stress, anxiety and depression (Lovibond &

Lovibond, 1995).

Profile of Mood States (POMS). The POMS is a list of 65 words/statements

to describe people’s feelings to measure their mood state over the previous

week. Subscales consist of: anger; confusion; depression; fatigue; tension and

vigour (McNaire, Lorr & Droppleman, 1971).

The Revised Scale for Caregiving Self-Efficacy (CSE). The CSE measures

caregiving self-efficacy on a 15-item self report scale (Steffen, McKibbin,,

Zeiss, Gallagher-Thompson, & Bandura, 2002).

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The Parent versus Anorexia Scale (PVA). The PVA measures parental

efficacy, the ability to take on a primary role of taking charge of the anorexia

at home (Rhodes, Baillie, Brown, & Madden, 2005).

The Eating Disorder Symptom Impact Scale (EDSIS). The EDSIS

measures the impact of the eating disorder on families. There are 24 items

which are completed by the carer, with four subscales; impact of starvation,

guilt, social isolation and dysregulated behaviours (Sepulveda et al., 2008c).

The Experience of Caregiving Inventory (ECI). The ECI measures

caregiving burden and is divided into two subscales; positive and negative.

ECI negative covers difficult behaviours, negative symptoms, stigma,

problems with services, effects on family, the need to provide backup,

dependency and loss. ECI positive covers positive personal experiences and

good relationships (Szmukler et al., 1996).

The Family Questionnaire (FQ). The FQ is a self-report measure of carers

expressed emotion with 20 items. There are two subscales; criticism and

emotional over-involvement (Wiedemann, Rayaki, Feinstein, & Hahlweg,

2002).

Level of Expressed Emotion Scale (LEE). The LEE measures levels of

expressed emotion and consists of four subscales: intrusiveness; emotional

response (whether hostile or warm); understanding of the illness and

tolerance/expectations. There are 60 true or false items (Cole & Kazarian,

1993).

Five-Minute Speech Sample (FMSS). The FMSS is measure of levels of

expressed emotion based on the content and tone of a five minute

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conversation with the carer about their thoughts and feelings in relation to

their loved one (Magaña et al., 1986).

The Accommodation and Enabling Scale for Eating Disorders (AESED).

The AESED measures behaviours the caregiver may elicit that might

accommodate the eating disorder. It is a 33 item Likert scale completed by

the caregiver (Sepulveda, Kyriacou, & Treasure, 2009).

The Brief Cope. This scale measures a variety of ways of coping with a

particular situation. Fourteen subscales are divided into adaptive and

maladaptive coping styles (Carver, Scheier, & Weintraub, 1989).

Social Problem-Solving Inventory- Revised (SPSI-R). The SPSI-R

measures perceptions of problem-solving skills under five subscales; positive

problem orientation, negative problem orientation, rational problem solving,

impulsivity/carelessness, and avoidance. There are 52 items to make up a

total score (D’Zurilla, Nezu & Maydeu-Olivares, 1996).

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Appendix B

Screenshot of the Tetris Task

147

Appendix C

Screenshot of the Quiz Task

149

Appendix D

Photographs of the Materials used in the Braille task

151

Appendix E

Screenshot of the Post-Task Questionnaire

153

Appendix F

Recruitment Poster

155

Appendix G

Participant Information Sheet

162

Appendix H

Consent Form

164

Appendix I

Clinician Information Sheet

167

Appendix J

Letter to Clinician

169

Appendix K

Participant Instruction Sheet

170

Starting the online programme

Please turn on your laptop and insert the dongle into your USB drive

immediately following your meal.

If you do not automatically connect to the internet Click ‘Connect’ on the

O2 Connection Manager.

Open your internet browser and click on the bookmark link entitled ‘Study’.

You should have the relevant box with the Braille inside and a score sheet

to hand in case you are asked to complete the Braille task.

Please turn on your speakers and turn up the volume.

Read through all the questions carefully and answer them as accurately as

you can.

Please work as quickly but as accurately as you can for all the tasks.

General Knowledge Quiz

Please read each question carefully and choose one of the options by

pressing 1, 2, 3 or 4 on your keyboard.

Click the next button to proceed to the next question.

If you answer correctly it will be highlighted in green. If you answer

incorrectly the answer you selected will appear crossed out in red and the

correct answer will be highlighted in green.

Continue answering the quiz questions for a duration of 15 minutes. The

quiz will automatically stop after 15 minutes.

Tetris

Blocks of different shapes drop from the top of the screen into a box. As the blocks

fall they can be rotated or moved horizontally so that every space in the box is

filled. When a horizontal line is completed, that line is "destroyed" giving you more

points and moving the rest of the placed pieces down by one square. If a line

remains incomplete, another line must be finished above it. The more lines that

stand incomplete, the higher the blocks above them stack, reducing the space in

which falling shapes can be manipulated. Eventually the blocks reach the top of the

screen and the game ends. If you clear 10 lines you will be moved up a level and

the blocks will move faster.

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Click ‘Play’ and choose level 5 and then click ‘OK’.

Use the left and right cursors to move the blocks horizontally. The down

cursor will move the block vertically down the screen faster and the up

cursor will rotate the blocks.

If the game ends during the 15 minutes click ‘OK’ (no need to enter your

name), click ‘Play’, ‘Play’ again and ‘OK’ again, to start the game on level 5.

The Tetris game will automatically stop after 15 minutes.

NB: DO NOT click on ‘Play full screen’ in the bottom left hand corner.

Braille

Use one hand to feel the Braille letters inside the box and the other to

write down your answers on the score sheet. It will be easier to keep your

hand inside the box for the duration of the task so that you do not lose

your place.

Identify the paper fastener in the top left hand corner to mark where the

start is.

Then moving your fingers from left to right work out what letter the Braille

is using your key card.

There are 11 random letters in each line. Each Braille symbol represents a

letter only (no words).

On your score sheet circle the letter you think is correct.

Move along to the next letter and so on until you reach the end of the line

and then go to the line below.

There are paper fasteners on the right hand side to differentiate each line

in case you do lose your place.

Keep going for 15 minutes when you will be notified by a noise on the

online programme.

Sitting quietly

Please remain silent for the duration of the 15 minutes. Do not engage in

any other activity other than sitting quietly.

Try not to talk to anyone around you and if someone tries to talk to you

simply tell them that you need to remain silent for the task and will talk to

them later.

If you are feeling very uncomfortable during this activity then you may

engage with something you normally would do (e.g. reading or knitting) but

please let us know what you did in the comment box at the end of the 15

minutes.

After 15 minutes you will be alerted to the end of the task by a noise on the

online programme.

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Appendix L

Ethical Approval Letter

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